E - The ALS Association Greater Philadelphia Chapter

Summer & Fall 2007 Calendar of Events
August
12th
30th Anniversary Picnic
Mermaid Lake,
Blue Bell, PA
September
7th
Michael Bartone Sixth
Annual Golf Tournament
Douglassville, PA
8th
Michael Bartone
Memorial Dinner Dance
Downingtown, PA
9th
Seventh Annual
Gino's Race
Codorus State Park,
Hanover, PA
Greater
11th & 18th
Newly Diagnosed Seminar:
Philadelphia Region
Ambler, PA
29th
2007 Ocean City Board…
Walk to D'Feet ALS®
Ocean City, NJ
19th
Lilly Pulitzer
"ALS Shop and Share"
Rolling Pines Golf Course,
Ardmore, PA
30th
ALS Family Trip
to Linvilla Orchards
Media, PA
21st
KAK Cup Golf Outing
Makefield Highlands Golf Course,
Yardley, PA
22nd
Sam Bonita Golf Outing
Rolling Pines Golf Course,
Berwick, PA
27th
Friends of John Fineran
Golf Outing
Ramblewood Country Club
Mount Laurel, NJ
25th
30th Anniversary Gala
SeaFair,
Philadelphia, PA
November
4th
14th Annual
Nurturing the Nurturer
The ACE Center,
Lafayette Hill, PA
October
2nd
Ventilator Decision
Conference
Malvern, PA
5th
Curt Schilling Golf Outing
Green Valley Country Club and
Whitemarsh Country Club, PA.
7th
8th Annual Scott Mackler
5K Run/Walk
Temple Beth El, 301 Possum Park Rd.,
Newark, DE
10th
2007 Greater Philadelphia
Walk to D'Feet ALS®
Valley Forge Military Academy,
Wayne, PA
20th
2007 Lehigh Valley
Walk to D'Feet ALS®
Center Valley, PA
Philadelphia
Chapter
news
Summer 2007
30th Anniversary
GALA
makes a
SPLASH
Mark your calendar!
Help us celebrate our 30th
Anniversary in style, with an
evening of fine art, jewelry,
and gourmet food on
Thursday, October 25, 2007.
MORE INFORMATION ON ALL OUR EVENTS, VISIT WWW.ALSPHILADELPHIA.ORG.
THIS EDITION OF ALS NEWS
is sponsored in part by
A GRANT FROM
sanofi-aventis
The ALS Association (Lou Gehrig’s Disease)
Greater Philadelphia Chapter
321 Norristown Road, Suite 260
Ambler, PA 19002-2755
T H I S I S S U E,
&
W E THANK
SALUTE
•DHL •Verizon •Skippy Peanut Butter
•CertainTeed •Neutrik USA •Bonita/Pacific Fruit
NON-PROFIT ORG. U.S.
POSTAGE
PAID
the first local viewing of this extraordinary gallery floating
art and antiques fair.
Our 30th Anniversary Gala event will be
held aboard the luxurious “SeaFair” yacht,
which docks in Philadelphia this fall. The yacht, billed as
the world's first fine art megayacht, will feature an
outstanding array of international fine art dealers and
jewelers in its 28 onboard galleries, encompassing 3 of
the yacht's 5 decks.
Shipboard exhibitors and dealers are of international caliber
in the fields of antiquities, old master paintings, 17th-19th
century decorative arts, modern and contemporary art,
textile, and antique and contemporary jewelry.
This exclusive experience is the perfect celebration of the
Chapter's 30 years of service to the ALS community
across our region. Join us for a memorable evening of
fine food, champagne and beverages, entertainment, and
Mark your calendars now and look for more information
coming soon! Sponsorships are available. Contact
Maryann Vagnoni at 215-643-5434 or
[email protected] for more information.
PERMIT NO. 215
® phone 1-877–GEHRIG–1
www.alsphiladelphia.org
WEST CHESTER, PA 19382
Join the Fun at Our 30th Anniversary Picnic
Come celebrate our 30th Anniversary at Mermaid Lake in Blue Bell, PA on August 12th from
Our mission is to lead the fight to cure and
treat ALS through global, cutting-edge research,
and to empower people with Lou Gehrig's Disease
and their families to live fuller lives by providing
them with compassionate care and support.
12:00- 6:00 p.m.! We want to share this special day with our PALS, supporters, families
and folks who have been with us since our early years. Enjoy a cookout, swimming,
waterslides, basketball, horseshoes, softball, volleyball, games and other activities. You and
your immediate family (up to 5 people) are invited. There is no charge for this event,
however RSVP is required. Please call April at 215-643-5434 ext. 42 or you can also
register online at www.alsphiladelphia.org. Deadline for registration is August 1st.
a
President’s Message . . . . . . . . . . . .p. 2
E.D.’s Musings . . . . . . . . . . . . . . . .p. 3
Neurologist’s News . . . . . . . . . . . .p. 4
Research Update . . . . . . . . . . . . .p. 5
Life Income Gift Help . . . . . . . . .p. 6
Advocacy Days . . . . . . . . . . . . . . .p. 7
Patient Profile: Larry Dodds . . . . .p. 8
Walks to D’Feet ALS® . . . .pp. 10-11
Past & Upcoming Events . .pp. 12-13
Patient Services Events/IMO pp. 14-15
Calendar of Events . . . . . . . . . . .p. 16
BOARD OF DIRECTORS
Chair, Board of Trustees
Benjamin S. Ohrenstein, Esq.
Chair, Board of Overseers
Ellyn C. Phillips, President
Vice Chairs
Dale J. Shimer
Patricia M. Lake Quinn
Secretaries
Susan L. Ross
Wendy Schermer, Esq.
Treasurer
Laurence J. Delaney, Jr.
Jeffrey L. Abrams, Esq.
Rhoda Albom
Irving Altman
Virginia Amaro
Gila Aviram
Michael Barkann
Julie Charlestein Benjamin
Bruce Berkowitz
Ellen Brosso
Suzanne Bruce
Tony Burns
Marcy Cardonick
Doug Carpenter
Malvina Charlestein
Morton L. Charlestein
William Conners
Ann Cutler
Michele DeVicaris
Christian Dyer
Arthur R. Ersner, MD
Vickie Farber
Lawrence Finkelstein, Esq.
Sidney Gable
Nancy Giles
Andrew A. Goldman
Robert Goudie
Zelda Greenspun
Kent C. Griswold
Thomas H. Hipp
Hara K. Jacobs
Richard T. Kanter
Elkan Katz
Frank J. Kelly
Robert A. Korn, Esq.
Ellen Farber Kurtzman
Leonard M. Lodish
Susan F. Lodish
JoAnn Marano
Christina Martin
Linda Matz
Paul McHendry
Kathleen A. McLamb
Shelbie Oppenheimer
Sandra Piersol
Doug Proctor
Anne B. Putney
Dan Quinn
Saul Reibstein
David M. Ricci
Mike Rifkin
Richard B. Ruben
Richard Schiffrin, Esq.
Shonda Schilling
Lisa Schwab
Al Slipakoff
Phillip Speiser
Albert J. Stunkard, M.D.
Craig R. Tractenberg, Esq.
Kathryn Voit
Gerard Voit
John Weber
Felice G. Wiener, Founder
Lauren Stevenson Yacina
President's Report Ellyn C. Phillips, President
T
he May 21 Phillies Phestival
was a record breaker,
raising $720,056. What a
night at Citizens Bank
Park…clearly the best ever.
Why? There are many
reasons, here are a few:
who is a physician, and father to 2 adorable
boys, Nathan and Aidan.
Wes is also dynamic, articulate and determined.
He has offered his assistance to the Chapter and
we have put him to work. In November, his walk
team, Absolutely Living Strong!!, was the top
fundraising team at the Wayne Walk. In
1. The Phillies organization's commitment to our
December, Wes spoke to the annual luncheon
cause keeps growing. In the past 23
audience, catching Governor Rendell's ear about
years over $9.4 million has been raised
a line item for ALS in the state budget. When
for ALS research and patient care.
our Chapter journeyed to Harrisburg in
February, Wes captured the heart of his
2. The Phillies players were incredibly
State Representative, Josh Shapiro.
engaged in this year's
Mr. Shapiro became our
Phestivities and helped out
crusader for the ALS line item
Wes
is
dynamic,
more than ever. Geoff
with the State House.
Geary, whose best
articulate & determined.
friend Erich Wendell
Wes is a natural born
…
a
natural
born
leader
had ALS, made a
leader and learner. He
special visit to the
took
to Advocacy Day
and learner.
ALS Association
like a duck to water.
He
took
to
Advocacy
Day
Clinical Services Center
Even though he had never
like a duck to water.
at Pennsylvania Hospital
been to The ALS
to film a show narrated
Association's Advocacy Day,
by Scott Palmer, that aired the
he found himself as a speaker
Sunday morning before the
giving advice in the session for “First
Phestival. Geoff also arrived early at the
Timers.” Wes's suggestions and optimism
Phestival to meet with our families.
were embraced by all who attended.
3. The Wives worked overtime, staying through
the live auction, helping to eke out every
possible extra dollar for our cause. Several
came to the ALS Clinic on June 2, and Marcia
Kennedy, Geoff Geary's girlfriend welled up
and said, “I realize how lucky I am, and how
lucky Geoff and I are to be healthy and to be
able to help out”. Marcia lost her grandfather
to ALS.
4. The Wes Rose factor.
Wes Rose is a relatively new patient. He was
diagnosed in May 2005. Wes is 35 years old,
a researcher and professor, married to Kelly,
E.D.’s Musings Jim Pinciotti, Executive Director
When it came time for the Phillies Phestival, I
knew that Wes would make an impression on the
team and their wives because he is their age
(well, not pitcher Jamie Moyer's age, he is bionic
and 44.)
My assumption was correct and Wes spoke at a
dinner the wives attended in early May and then
to the players the day before the Phestival. The
players and their wives were moved by Wes's
remarks. They could relate to Wes, and the
Phestival took on heightened meaning to many of
them. Geoff Geary and Chase Utley spent a long
time talking with Wes after his speech. Adam
Eaton remarked that prior to Wes's talk, he had
The Board Chair Message by Benjamin Ohrenstein alternates issues with the President's Report.
ad·vo·cate
n. _æd v_ k_t,noun
a person who
speaks or writes
in support or
defense of a
person, cause,
etc. a person who pleads for
or in behalf of another;
intercessor. a person who
pleads the cause of another in
a court of law -Synonyms:
champion, proponent, backer.
O
ne important part of the Mission
of The ALS Association is
advocacy. This takes many forms
including working with insurance
companies on behalf of PALS and
families, traveling to Washington, DC
each May to speak to our elected
representatives and working at a grass
roots level with state and local
governments to improve programs and
services for people living with ALS.
To this end, the Chapter and many of
our friends have taken on the task of
pursuing a line item in the
Pennsylvania state budget in the
amount of $800,000, to support the
ALS Association's services to people
living with ALS. We are most fortunate
to have Representative Josh Shapiro
(D-153) and Senator Jane Orie (R-40)
as our champions in Harrisburg as well
as the support of Representative Bryan
Cutler (R-100) and Senator Michael
O'Pake (D-11).
At the writing of this article, we
anticipate that the House of
Representative's version of the state
budget will include this line item. It is
expected that the final budget will
result from a conference committee of
the House and Senate, and that the
success of this initiative will depend on
the strength of our advocacy efforts.
I am extremely encouraged and proud
of the efforts of all of our advocates
thus far. While Representative Shapiro
has been steadfast in his support,
setting this as his top budget priority
for this year, he and his staff have
been glowing in their praise of our
advocacy efforts. We have been told
that several other members of congress
have stopped Josh in the halls of the
capitol to tell him of the calls they have
received from their constituents about
this matter and that, as a result, Josh
could count on their support.
This is a marvelous example of a
representative democracy in action. It
shows how, by working together, we
can make a difference. If you are one
of the people that made a visit, sent an
email or made a phone call, thank
you. If you live in New Jersey or
Delaware, just wait…we will be calling
upon you in the future. If you have not
yet begun to develop a relationship
with your elected officials, there is no
time like the present.
I give special thanks to our
Communications Manager, Jenny Ruth,
who together with Michael Bernarding
of the Western PA Chapter and Kathy
Kromer of the National DC office, took
on the lion’s share of the work in
organizing this effort. Mostly, I thank
each of you who support us every day.
We can't succeed without you. a
no idea what the Phestival was about,
but once he heard Wes, he couldn't
imagine being anywhere else on May
21. Similarly, Greg Dobbs told me that
he and his wife had just had a baby
girl and he felt such compassion for
Wes, because he (Greg) knew what it
was to be a father and have a child
depend on you.
Wes never seems to tire and is always
up for another challenge. His
indomitable spirit has inspired many,
including the Phillies who came out on
May 21 to strikeout Wes Rose's and
Lou Gehrig's Disease. a
“Wes spoke to the annual
luncheon audience, catching
Governor Rendell's ear…”
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
3
BOARD OF DIRECTORS
Chair, Board of Trustees
Benjamin S. Ohrenstein, Esq.
Chair, Board of Overseers
Ellyn C. Phillips, President
Vice Chairs
Dale J. Shimer
Patricia M. Lake Quinn
Secretaries
Susan L. Ross
Wendy Schermer, Esq.
Treasurer
Laurence J. Delaney, Jr.
Jeffrey L. Abrams, Esq.
Rhoda Albom
Irving Altman
Virginia Amaro
Gila Aviram
Michael Barkann
Julie Charlestein Benjamin
Bruce Berkowitz
Ellen Brosso
Suzanne Bruce
Tony Burns
Marcy Cardonick
Doug Carpenter
Malvina Charlestein
Morton L. Charlestein
William Conners
Ann Cutler
Michele DeVicaris
Christian Dyer
Arthur R. Ersner, MD
Vickie Farber
Lawrence Finkelstein, Esq.
Sidney Gable
Nancy Giles
Andrew A. Goldman
Robert Goudie
Zelda Greenspun
Kent C. Griswold
Thomas H. Hipp
Hara K. Jacobs
Richard T. Kanter
Elkan Katz
Frank J. Kelly
Robert A. Korn, Esq.
Ellen Farber Kurtzman
Leonard M. Lodish
Susan F. Lodish
JoAnn Marano
Christina Martin
Linda Matz
Paul McHendry
Kathleen A. McLamb
Shelbie Oppenheimer
Sandra Piersol
Doug Proctor
Anne B. Putney
Dan Quinn
Saul Reibstein
David M. Ricci
Mike Rifkin
Richard B. Ruben
Richard Schiffrin, Esq.
Shonda Schilling
Lisa Schwab
Al Slipakoff
Phillip Speiser
Albert J. Stunkard, M.D.
Craig R. Tractenberg, Esq.
Kathryn Voit
Gerard Voit
John Weber
Felice G. Wiener, Founder
Lauren Stevenson Yacina
President's Report Ellyn C. Phillips, President
T
he May 21 Phillies Phestival
was a record breaker,
raising $720,056. What a
night at Citizens Bank
Park…clearly the best ever.
Why? There are many
reasons, here are a few:
who is a physician, and father to 2 adorable
boys, Nathan and Aidan.
Wes is also dynamic, articulate and determined.
He has offered his assistance to the Chapter and
we have put him to work. In November, his walk
team, Absolutely Living Strong!!, was the top
fundraising team at the Wayne Walk. In
1. The Phillies organization's commitment to our
December, Wes spoke to the annual luncheon
cause keeps growing. In the past 23
audience, catching Governor Rendell's ear about
years over $9.4 million has been raised
a line item for ALS in the state budget. When
for ALS research and patient care.
our Chapter journeyed to Harrisburg in
February, Wes captured the heart of his
2. The Phillies players were incredibly
State Representative, Josh Shapiro.
engaged in this year's
Mr. Shapiro became our
Phestivities and helped out
crusader for the ALS line item
Wes
is
dynamic,
more than ever. Geoff
with the State House.
Geary, whose best
articulate & determined.
friend Erich Wendell
Wes is a natural born
…
a
natural
born
leader
had ALS, made a
leader and learner. He
special visit to the
took
to Advocacy Day
and learner.
ALS Association
like a duck to water.
He
took
to
Advocacy
Day
Clinical Services Center
Even though he had never
like a duck to water.
at Pennsylvania Hospital
been to The ALS
to film a show narrated
Association's Advocacy Day,
by Scott Palmer, that aired the
he found himself as a speaker
Sunday morning before the
giving advice in the session for “First
Phestival. Geoff also arrived early at the
Timers.” Wes's suggestions and optimism
Phestival to meet with our families.
were embraced by all who attended.
3. The Wives worked overtime, staying through
the live auction, helping to eke out every
possible extra dollar for our cause. Several
came to the ALS Clinic on June 2, and Marcia
Kennedy, Geoff Geary's girlfriend welled up
and said, “I realize how lucky I am, and how
lucky Geoff and I are to be healthy and to be
able to help out”. Marcia lost her grandfather
to ALS.
4. The Wes Rose factor.
Wes Rose is a relatively new patient. He was
diagnosed in May 2005. Wes is 35 years old,
a researcher and professor, married to Kelly,
E.D.’s Musings Jim Pinciotti, Executive Director
When it came time for the Phillies Phestival, I
knew that Wes would make an impression on the
team and their wives because he is their age
(well, not pitcher Jamie Moyer's age, he is bionic
and 44.)
My assumption was correct and Wes spoke at a
dinner the wives attended in early May and then
to the players the day before the Phestival. The
players and their wives were moved by Wes's
remarks. They could relate to Wes, and the
Phestival took on heightened meaning to many of
them. Geoff Geary and Chase Utley spent a long
time talking with Wes after his speech. Adam
Eaton remarked that prior to Wes's talk, he had
The Board Chair Message by Benjamin Ohrenstein alternates issues with the President's Report.
ad·vo·cate
n. _æd v_ k_t,noun
a person who
speaks or writes
in support or
defense of a
person, cause,
etc. a person who pleads for
or in behalf of another;
intercessor. a person who
pleads the cause of another in
a court of law -Synonyms:
champion, proponent, backer.
O
ne important part of the Mission
of The ALS Association is
advocacy. This takes many forms
including working with insurance
companies on behalf of PALS and
families, traveling to Washington, DC
each May to speak to our elected
representatives and working at a grass
roots level with state and local
governments to improve programs and
services for people living with ALS.
To this end, the Chapter and many of
our friends have taken on the task of
pursuing a line item in the
Pennsylvania state budget in the
amount of $800,000, to support the
ALS Association's services to people
living with ALS. We are most fortunate
to have Representative Josh Shapiro
(D-153) and Senator Jane Orie (R-40)
as our champions in Harrisburg as well
as the support of Representative Bryan
Cutler (R-100) and Senator Michael
O'Pake (D-11).
At the writing of this article, we
anticipate that the House of
Representative's version of the state
budget will include this line item. It is
expected that the final budget will
result from a conference committee of
the House and Senate, and that the
success of this initiative will depend on
the strength of our advocacy efforts.
I am extremely encouraged and proud
of the efforts of all of our advocates
thus far. While Representative Shapiro
has been steadfast in his support,
setting this as his top budget priority
for this year, he and his staff have
been glowing in their praise of our
advocacy efforts. We have been told
that several other members of congress
have stopped Josh in the halls of the
capitol to tell him of the calls they have
received from their constituents about
this matter and that, as a result, Josh
could count on their support.
This is a marvelous example of a
representative democracy in action. It
shows how, by working together, we
can make a difference. If you are one
of the people that made a visit, sent an
email or made a phone call, thank
you. If you live in New Jersey or
Delaware, just wait…we will be calling
upon you in the future. If you have not
yet begun to develop a relationship
with your elected officials, there is no
time like the present.
I give special thanks to our
Communications Manager, Jenny Ruth,
who together with Michael Bernarding
of the Western PA Chapter and Kathy
Kromer of the National DC office, took
on the lion’s share of the work in
organizing this effort. Mostly, I thank
each of you who support us every day.
We can't succeed without you. a
no idea what the Phestival was about,
but once he heard Wes, he couldn't
imagine being anywhere else on May
21. Similarly, Greg Dobbs told me that
he and his wife had just had a baby
girl and he felt such compassion for
Wes, because he (Greg) knew what it
was to be a father and have a child
depend on you.
Wes never seems to tire and is always
up for another challenge. His
indomitable spirit has inspired many,
including the Phillies who came out on
May 21 to strikeout Wes Rose's and
Lou Gehrig's Disease. a
“Wes spoke to the annual
luncheon audience, catching
Governor Rendell's ear…”
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
3
Research Update — from The ALS Association’s National Office
Cognitive & Behavioral Impairments in ALS - An Update
Zachary Simmons,
MD, Director,
Neuromuscular
Service and ALS
Clinic Milton Hershey
Medical Center
A
great deal of attention has been
paid lately to the issues of
cognitive and behavioral dysfunction
in ALS. The research on this has been
fascinating, but patients and families
often ask what this means for them. A
brief review of this topic may help.
A 1998 paper (Neary D, et al.
Neurology 1998;51:1546-1554)
defined 3 subtypes of frontotemporal
lobar degeneration (FTLD). The
most common is frontotemporal
dementia (FTD), manifested by a
decline in social conduct, resulting
in poor manners, poor social
graces, and more passive or more
outgoing/ aggressive behavior.
These changes, referred to as
behavioral impairment, may be
accompanied by cognitive
impairment or “executive
dysfunction,” resulting in difficulty
with abstraction, planning, and
problem solving, and with a lack
insight into deficits, so that the
persons affected are unaware or
unconcerned about these changes.
The other two types of FTLD result in
cognitive impairment manifested by
language problems. Progressive
nonfluent aphasia results in nonfluent
speech containing grammatical errors,
brief phrases in place of sentences,
word-finding difficulties, and phonemic
paraphasic errors, such as “parrot” for
“carrot” or “robber” for “robin.”
Semantic dementia leaves the affected
individual with speech which is fluent
and grammatically correct, but with
increasingly empty content because of
progressively poorer ability to
understand word meanings.
Individuals often make semantic
paraphasic errors, such as “sock” for
“glove” or “cat” for “tiger.” They may
also develop difficulty recognizing
familiar objects or faces.
It is important to understand that more
than one of these subtypes often is
present in an affected individual.
Also, many individuals with ALS do
not develop full-blown FTLD as defined
by the Neary criteria, but have a lesser
degree of cognitive or behavioral
impairment which can be identified on
special testing, but which may not be
readily apparent otherwise. A paper
Individuals and their families
are asked to make
critical decisions
regarding their health care…
If cognitive impairment is
relatively common in ALS,
then it is important to take this
into account as these important
decisions are made.
in 2003 (Lomen-Hoerth C, et al,
Neurology 2003;60:1094-1097)
found that deficits of executive function
are present in half of ALS patients, but
that fewer have FTLD as defined in the
1998 paper.
We have recently developed a
questionnaire which we administer in
ALS clinic to screen individuals for
cognitive impairment (Flaherty-Craig
C, et al. Neurology 2006;67:20702072). Patients are asked to name or
to write as many things as they can
beginning with a particular letter
within a specified period of time.
These tests of verbal fluency are
abnormal in many individuals with
ALS. Patients are also asked questions
which assess their abstract reasoning
and judgment. All these are measures
of executive function. When testing
110 patients with ALS, we found that
deficiencies in verbal fluency, abstract
reasoning, and judgment were found
in 20.0%, 18.6%, and 35.7% of limbonset patients, and in 37.5%, 25.0%,
and 60.0% of bulbar-onset patients.
This shows that a strikingly high
number of individuals with ALS have
deficits in problem-solving abilities as
measured by abstract reasoning and
judgment. In another study, we
found that most individuals (59.2%)
with ALS and deficient verbal
fluency were deficient in measures
of problem solving, and that most
of those (72.4%) with intact verbal
fluency scored average or above in
measures of problem solving.
Tests of verbal fluency, abstract
reasoning, and judgment are
excellent ways to assess cognitive
function, but what about behavior?
We administer an instrument
known as the Frontal Behavioral
Inventory to caregivers of
individuals with ALS. This instrument
asks a series of questions to identify
whether the individual with ALS is
demonstrating behaviors of the type
described by the Neary criteria. If the
deviations from normal are severe
enough, FTD can be diagnosed.
If individuals with ALS demonstrate
abnormalities on our screens for
cognitive or behavioral dysfunction, we
offer them the opportunity to
participate in more comprehensive
testing. This includes a detailed
(Continued on page 7)
MICE SHOW HOW MITOCHONDRIA FLOW IN NERVE CELLS
Roberta Friedman, Ph.D.,
Research Department Information
Coordinator,
The ALS Association
[Quick Summary: An engineered mouse
can allow scientists to watch the flow
of energy supplies within nerve cells
suspected to be impaired in ALS.
These “MitoMice” should provide an
easier way to study the cellular traffic
in the disease.]
B
y improving the techniques available to
study the role of mitochondria in the
nervous system in amyotrophic lateral
sclerosis (ALS, also known as Lou Gehrig's
disease), a team of researchers, including
ALS Association-funded investigator
Robert Burgess, Ph.D., at The Jackson
Laboratory, Bar Harbor, Maine, are
paving the way to target therapies to
specific cells affected and the processes
that could be repaired to change the
disorder's course.
As published in the journal Nature
Methods, the researchers reported on a
mouse that is engineered to allow scientists
to follow the flow of energy supplies within
living nerve cells.
“I hope this progress will prompt others in
the ALS field to take advantage of the
mice,” Burgess said. “Experiments in
SOD1 mice will be the next step in this
project.”
Funded in part by a grant from The ALS
Association to Burgess, the team has
engineered the animals they have named
MitoMice in which the cellular power
plants called mitochondria are selectively
labeled by gene manipulation to glow
under the microscope. The mice are
normal but reveal the flow of these key
organelles within their cells.
The motor neurons, exceptionally long
nerve cells, die selectively in ALS. Their
mitochondria must reach to nerve endings
that connect to and contract muscle, in
some instances up to a meter away from
their cell bodies in the spinal cord.
Scientists suspect that the flow of
mitochondria is impaired in the motor
neurons affected by ALS. The MitoMice
should provide an easier way to study the
role of mitochondrial traffic in the disease.
Future plans for the researchers include
studying the mitochondrial flow in
MitoMice bred with mice that have
another mutated protein linked to some
inherited forms of ALS. By crossing
MitoMice with the SOD1 mutated mice
(that is, with a gene change that produces
a toxic version of the protein, copper zinc
superoxide dismutase), the resulting
changes in mitochondria transport might
lead to important advances in
understanding the disease process and
how to alter it.
Other researchers involved in this project
are Thomas Misgeld, M.D., Martin
Kerschensteiner, M.D., and Florence
Bareyre, Ph.D., in Munich, working with
Jeff Lichtman, M.D., Ph.D., at Harvard.
The Jackson Laboratory in Bar Harbor,
Maine, will be able to provide these mice
to researchers. Refer to the “Strains Under
Development” page of The Jackson
Laboratory website to specify interest in
these mice or search for stock number
6614 (MitoC) or 6617 (MitoS) for more
information.
Burgess is funded by The Alan L. Phillips
Discovery Grant Award, which is made
possible through support from Morton and
Malvina Charlestein.
Scientists suspect that
the flow of
mitochondria is
impaired in the motor
neurons affected by
ALS. The MitoMice
should provide an
easier way to study the
role of mitochondrial
traffic in the disease.
See www.alsa.org under the research
tab for further information about
mitochondria in ALS. a
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
5
Research Update — from The ALS Association’s National Office
Cognitive & Behavioral Impairments in ALS - An Update
Zachary Simmons,
MD, Director,
Neuromuscular
Service and ALS
Clinic Milton Hershey
Medical Center
A
great deal of attention has been
paid lately to the issues of
cognitive and behavioral dysfunction
in ALS. The research on this has been
fascinating, but patients and families
often ask what this means for them. A
brief review of this topic may help.
A 1998 paper (Neary D, et al.
Neurology 1998;51:1546-1554)
defined 3 subtypes of frontotemporal
lobar degeneration (FTLD). The
most common is frontotemporal
dementia (FTD), manifested by a
decline in social conduct, resulting
in poor manners, poor social
graces, and more passive or more
outgoing/ aggressive behavior.
These changes, referred to as
behavioral impairment, may be
accompanied by cognitive
impairment or “executive
dysfunction,” resulting in difficulty
with abstraction, planning, and
problem solving, and with a lack
insight into deficits, so that the
persons affected are unaware or
unconcerned about these changes.
The other two types of FTLD result in
cognitive impairment manifested by
language problems. Progressive
nonfluent aphasia results in nonfluent
speech containing grammatical errors,
brief phrases in place of sentences,
word-finding difficulties, and phonemic
paraphasic errors, such as “parrot” for
“carrot” or “robber” for “robin.”
Semantic dementia leaves the affected
individual with speech which is fluent
and grammatically correct, but with
increasingly empty content because of
progressively poorer ability to
understand word meanings.
Individuals often make semantic
paraphasic errors, such as “sock” for
“glove” or “cat” for “tiger.” They may
also develop difficulty recognizing
familiar objects or faces.
It is important to understand that more
than one of these subtypes often is
present in an affected individual.
Also, many individuals with ALS do
not develop full-blown FTLD as defined
by the Neary criteria, but have a lesser
degree of cognitive or behavioral
impairment which can be identified on
special testing, but which may not be
readily apparent otherwise. A paper
Individuals and their families
are asked to make
critical decisions
regarding their health care…
If cognitive impairment is
relatively common in ALS,
then it is important to take this
into account as these important
decisions are made.
in 2003 (Lomen-Hoerth C, et al,
Neurology 2003;60:1094-1097)
found that deficits of executive function
are present in half of ALS patients, but
that fewer have FTLD as defined in the
1998 paper.
We have recently developed a
questionnaire which we administer in
ALS clinic to screen individuals for
cognitive impairment (Flaherty-Craig
C, et al. Neurology 2006;67:20702072). Patients are asked to name or
to write as many things as they can
beginning with a particular letter
within a specified period of time.
These tests of verbal fluency are
abnormal in many individuals with
ALS. Patients are also asked questions
which assess their abstract reasoning
and judgment. All these are measures
of executive function. When testing
110 patients with ALS, we found that
deficiencies in verbal fluency, abstract
reasoning, and judgment were found
in 20.0%, 18.6%, and 35.7% of limbonset patients, and in 37.5%, 25.0%,
and 60.0% of bulbar-onset patients.
This shows that a strikingly high
number of individuals with ALS have
deficits in problem-solving abilities as
measured by abstract reasoning and
judgment. In another study, we
found that most individuals (59.2%)
with ALS and deficient verbal
fluency were deficient in measures
of problem solving, and that most
of those (72.4%) with intact verbal
fluency scored average or above in
measures of problem solving.
Tests of verbal fluency, abstract
reasoning, and judgment are
excellent ways to assess cognitive
function, but what about behavior?
We administer an instrument
known as the Frontal Behavioral
Inventory to caregivers of
individuals with ALS. This instrument
asks a series of questions to identify
whether the individual with ALS is
demonstrating behaviors of the type
described by the Neary criteria. If the
deviations from normal are severe
enough, FTD can be diagnosed.
If individuals with ALS demonstrate
abnormalities on our screens for
cognitive or behavioral dysfunction, we
offer them the opportunity to
participate in more comprehensive
testing. This includes a detailed
(Continued on page 7)
MICE SHOW HOW MITOCHONDRIA FLOW IN NERVE CELLS
Roberta Friedman, Ph.D.,
Research Department Information
Coordinator,
The ALS Association
[Quick Summary: An engineered mouse
can allow scientists to watch the flow
of energy supplies within nerve cells
suspected to be impaired in ALS.
These “MitoMice” should provide an
easier way to study the cellular traffic
in the disease.]
B
y improving the techniques available to
study the role of mitochondria in the
nervous system in amyotrophic lateral
sclerosis (ALS, also known as Lou Gehrig's
disease), a team of researchers, including
ALS Association-funded investigator
Robert Burgess, Ph.D., at The Jackson
Laboratory, Bar Harbor, Maine, are
paving the way to target therapies to
specific cells affected and the processes
that could be repaired to change the
disorder's course.
As published in the journal Nature
Methods, the researchers reported on a
mouse that is engineered to allow scientists
to follow the flow of energy supplies within
living nerve cells.
“I hope this progress will prompt others in
the ALS field to take advantage of the
mice,” Burgess said. “Experiments in
SOD1 mice will be the next step in this
project.”
Funded in part by a grant from The ALS
Association to Burgess, the team has
engineered the animals they have named
MitoMice in which the cellular power
plants called mitochondria are selectively
labeled by gene manipulation to glow
under the microscope. The mice are
normal but reveal the flow of these key
organelles within their cells.
The motor neurons, exceptionally long
nerve cells, die selectively in ALS. Their
mitochondria must reach to nerve endings
that connect to and contract muscle, in
some instances up to a meter away from
their cell bodies in the spinal cord.
Scientists suspect that the flow of
mitochondria is impaired in the motor
neurons affected by ALS. The MitoMice
should provide an easier way to study the
role of mitochondrial traffic in the disease.
Future plans for the researchers include
studying the mitochondrial flow in
MitoMice bred with mice that have
another mutated protein linked to some
inherited forms of ALS. By crossing
MitoMice with the SOD1 mutated mice
(that is, with a gene change that produces
a toxic version of the protein, copper zinc
superoxide dismutase), the resulting
changes in mitochondria transport might
lead to important advances in
understanding the disease process and
how to alter it.
Other researchers involved in this project
are Thomas Misgeld, M.D., Martin
Kerschensteiner, M.D., and Florence
Bareyre, Ph.D., in Munich, working with
Jeff Lichtman, M.D., Ph.D., at Harvard.
The Jackson Laboratory in Bar Harbor,
Maine, will be able to provide these mice
to researchers. Refer to the “Strains Under
Development” page of The Jackson
Laboratory website to specify interest in
these mice or search for stock number
6614 (MitoC) or 6617 (MitoS) for more
information.
Burgess is funded by The Alan L. Phillips
Discovery Grant Award, which is made
possible through support from Morton and
Malvina Charlestein.
Scientists suspect that
the flow of
mitochondria is
impaired in the motor
neurons affected by
ALS. The MitoMice
should provide an
easier way to study the
role of mitochondrial
traffic in the disease.
See www.alsa.org under the research
tab for further information about
mitochondria in ALS. a
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
5
Life Income Gifts Help Donors and The ALS Association
Advocacy Day 2007
Life income gifts can be a great way for individuals to make an investment in their own financial
O
security and that of The ALS Association through gift opportunities that provide income for life.
Life income gifts come in different shapes and sizes, and each person's own financial goals and
circumstances will determine the best gift type to be considered. In this article we will compare two of
the most common life income gifts — Charitable Gift Annuities and Charitable Remainder Trusts…
A charitable gift annuity (CGA)
is a simple contractual arrangement in
which the donor contributes assets to
The ALS Association and in return, the
Association agrees to make fixed
income payments for life to one or
more designated individuals, known as
the annuitant(s). Upon the death of
the annuitant(s), the remaining assets
will be used by The ALS Association in
support of its mission.
The annuity payments are determined
at the time the annuity is established
and will be based on the age of the
annuitant(s) at that time. An annuitant
must be at least 60 years old to receive
income from an ALS Association gift
annuity. Gift annuities may be funded
with cash or appreciated securities; the
minimum value to establish a gift
annuity is $10,000.
A charitable gift annuity has
several key benefits:
1. Donors who itemize are eligible for
an income tax charitable deduction
in the year of the gift.
2. A portion of the donor's annuity
payments will be tax-free,
representing a return of the
principal contributed.
3. If the donor contributes appreciated
assets for a gift annuity, any capital
gains tax due is generally paid
over time rather than in one
lump sum.
4. Donors can turn low-yielding assets
into higher yielding assets, thus
increasing their available income.
3. Beneficiaries: The donor can
choose who the income
beneficiaries will be.
4. Charities: Donors choose which
charities will receive the remaining
assets, and they can even reserve
the right to change charitable
beneficiaries.
A charitable remainder trust
(CRT) is a charitable arrangement in
which donors contribute assets into a
trust - cash, stock, real estate, or other
assets. The donor, their spouse, or
designated loved ones receive an income
from the trust. When the trust terminates
at the end of the income period, the
assets left over are distributed to The ALS
Association (and other charities the
donor may wish to remember).
The benefits of establishing a
CRT include:
What makes a CRT so powerful
is its flexibility in providing
donors with numerous options:
1. Income: Donors can choose a fixed
or variable income stream. They
also choose the payout rate, within
certain IRS guidelines.
2. Timing: The income can be paid for
life or for a term of years up to 20
years, or a combination of life and
a term of years.
1. An income tax charitable
deduction on a portion of the gift
(if you itemize).
2. Avoidance of all capital gains tax
on appreciated assets contributed
to the trust.
3. A reduction of estate tax liability if
you have a taxable estate.
A CRT can be established during
lifetime or it can be established after
death through a will or living trust.
The donor will need a qualified
attorney to draft the trust. Generally,
because of the fees involved, a CRT
should be funded with a minimum gift
of $100,000. a
If you have any questions about these two life income gift vehicles or planned giving in general,
please contact Jeff Cline, Chief Development Officer, at 215-643-5434 or [email protected].
We also encourage you to visit the Chapter's informative planned giving website at
http://alsphiladelphia.planyourlegacy.org.
n May 14-16, 2007, ALS advocates from across the
country once again united in Washington, DC for The
ALS Association's annual National ALS Advocacy Day and
Public Policy Conference. The Greater Philadelphia Chapter
sent over 55 delegates, including 7 people with ALS, to this
empowering event, which is
the single largest gathering
of the ALS community in the
country. They joined
hundreds of representatives
from the ALS community to
share the ALS message with
Members of Congress.
In their meetings, advocates shared the real life impacts of the
disease, its toll on families and the urgent need for Congress
to act. Importantly, advocates also educated their Senators
and Representatives about the increased rate of ALS in
military veterans, a subject that clearly seized Members'
attention on both sides of
the Capitol. And advocates
called on Members to
support funding for ALS
research and to pass the
ALS Registry Act (H.R.
2295/S. 1382), legislation
that would establish a
national ALS registry at the
Centers for Disease Control
and Prevention.
By all accounts, Advocacy
Day 2007 was a
tremendous success.
Chapter advocates pose for a special photo with Speaker Nancy Pelosi (CA-8),
Judging by the response
Representative Patrick Murphy (PA-8), and Representative Diana DeGette (CO-1).
Advocates delivered our
from advocates and
message to all 535
Members of Congress alike, our advocacy is making a
Members of Congress, and since May, over 275 Members of
difference! This year's Advocacy Day and Public Policy
Congress have joined as cosponsors of the ALS Registry Act,
Conference demonstrates once again how The ALS
an unprecedented show of support so soon after Advocacy
Association is lighting the way for a treatment and cure. a
Day! As of early July, 248 House Members and 36 Senators
had cosponsored the bill.
Lea R. Powell Dedication
On Monday, April 23, 2007 we celebrated the naming dedication of the Lea R. Powell
Patient Services Programs at the Chapter office.
In attendance were the Board Chair, Ben Ohrenstein, Chapter President, Ellyn Phillips,
Executive Director, Jim Pinciotti and several members of the Patient Services staff and
Mr. Powell and his family. The chapter is grateful for the generous contribution from
the Powell family.
Cognitive and Behavioral Impairments in ALS - An Update
(Continued from Page 4)
assessment of language skills. Deficits of language can be striking in some individuals with ALS, demonstrating features of progressive
nonfluent aphasia or semantic dementia, unrelated to their motor skills.
Why are these assessments important? After all, individuals with ALS and their caregivers often are struggling to cope with a host of
physical limitations which impair independence, mobility, nutrition, and communication, and which require walkers, wheelchairs, adaptive
equipment for activities of daily living, augmentative communication devices, and modifications in diet. My personal view is that cognitive
and behavioral assessments are essential. Individuals and their families are asked to make critical decisions regarding their health care,
including decisions about feeding tubes, non-invasive ventilation, tracheostomy/mechanical ventilation, and advance directives. If cognitive
impairment is relatively common in ALS, then it is important to take this into account as these important decisions are made. We do not yet
know the best way to help individuals with ALS and their caregivers manage important decisions in the face of such cognitive and behavioral
changes, but we are designing approaches which we hope will be helpful and successful in achieving the best possible quality of life for
these individuals and their caregivers. a
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
7
Life Income Gifts Help Donors and The ALS Association
Advocacy Day 2007
Life income gifts can be a great way for individuals to make an investment in their own financial
O
security and that of The ALS Association through gift opportunities that provide income for life.
Life income gifts come in different shapes and sizes, and each person's own financial goals and
circumstances will determine the best gift type to be considered. In this article we will compare two of
the most common life income gifts — Charitable Gift Annuities and Charitable Remainder Trusts…
A charitable gift annuity (CGA)
is a simple contractual arrangement in
which the donor contributes assets to
The ALS Association and in return, the
Association agrees to make fixed
income payments for life to one or
more designated individuals, known as
the annuitant(s). Upon the death of
the annuitant(s), the remaining assets
will be used by The ALS Association in
support of its mission.
The annuity payments are determined
at the time the annuity is established
and will be based on the age of the
annuitant(s) at that time. An annuitant
must be at least 60 years old to receive
income from an ALS Association gift
annuity. Gift annuities may be funded
with cash or appreciated securities; the
minimum value to establish a gift
annuity is $10,000.
A charitable gift annuity has
several key benefits:
1. Donors who itemize are eligible for
an income tax charitable deduction
in the year of the gift.
2. A portion of the donor's annuity
payments will be tax-free,
representing a return of the
principal contributed.
3. If the donor contributes appreciated
assets for a gift annuity, any capital
gains tax due is generally paid
over time rather than in one
lump sum.
4. Donors can turn low-yielding assets
into higher yielding assets, thus
increasing their available income.
3. Beneficiaries: The donor can
choose who the income
beneficiaries will be.
4. Charities: Donors choose which
charities will receive the remaining
assets, and they can even reserve
the right to change charitable
beneficiaries.
A charitable remainder trust
(CRT) is a charitable arrangement in
which donors contribute assets into a
trust - cash, stock, real estate, or other
assets. The donor, their spouse, or
designated loved ones receive an income
from the trust. When the trust terminates
at the end of the income period, the
assets left over are distributed to The ALS
Association (and other charities the
donor may wish to remember).
The benefits of establishing a
CRT include:
What makes a CRT so powerful
is its flexibility in providing
donors with numerous options:
1. Income: Donors can choose a fixed
or variable income stream. They
also choose the payout rate, within
certain IRS guidelines.
2. Timing: The income can be paid for
life or for a term of years up to 20
years, or a combination of life and
a term of years.
1. An income tax charitable
deduction on a portion of the gift
(if you itemize).
2. Avoidance of all capital gains tax
on appreciated assets contributed
to the trust.
3. A reduction of estate tax liability if
you have a taxable estate.
A CRT can be established during
lifetime or it can be established after
death through a will or living trust.
The donor will need a qualified
attorney to draft the trust. Generally,
because of the fees involved, a CRT
should be funded with a minimum gift
of $100,000. a
If you have any questions about these two life income gift vehicles or planned giving in general,
please contact Jeff Cline, Chief Development Officer, at 215-643-5434 or [email protected].
We also encourage you to visit the Chapter's informative planned giving website at
http://alsphiladelphia.planyourlegacy.org.
n May 14-16, 2007, ALS advocates from across the
country once again united in Washington, DC for The
ALS Association's annual National ALS Advocacy Day and
Public Policy Conference. The Greater Philadelphia Chapter
sent over 55 delegates, including 7 people with ALS, to this
empowering event, which is
the single largest gathering
of the ALS community in the
country. They joined
hundreds of representatives
from the ALS community to
share the ALS message with
Members of Congress.
In their meetings, advocates shared the real life impacts of the
disease, its toll on families and the urgent need for Congress
to act. Importantly, advocates also educated their Senators
and Representatives about the increased rate of ALS in
military veterans, a subject that clearly seized Members'
attention on both sides of
the Capitol. And advocates
called on Members to
support funding for ALS
research and to pass the
ALS Registry Act (H.R.
2295/S. 1382), legislation
that would establish a
national ALS registry at the
Centers for Disease Control
and Prevention.
By all accounts, Advocacy
Day 2007 was a
tremendous success.
Chapter advocates pose for a special photo with Speaker Nancy Pelosi (CA-8),
Judging by the response
Representative Patrick Murphy (PA-8), and Representative Diana DeGette (CO-1).
Advocates delivered our
from advocates and
message to all 535
Members of Congress alike, our advocacy is making a
Members of Congress, and since May, over 275 Members of
difference! This year's Advocacy Day and Public Policy
Congress have joined as cosponsors of the ALS Registry Act,
Conference demonstrates once again how The ALS
an unprecedented show of support so soon after Advocacy
Association is lighting the way for a treatment and cure. a
Day! As of early July, 248 House Members and 36 Senators
had cosponsored the bill.
Lea R. Powell Dedication
On Monday, April 23, 2007 we celebrated the naming dedication of the Lea R. Powell
Patient Services Programs at the Chapter office.
In attendance were the Board Chair, Ben Ohrenstein, Chapter President, Ellyn Phillips,
Executive Director, Jim Pinciotti and several members of the Patient Services staff and
Mr. Powell and his family. The chapter is grateful for the generous contribution from
the Powell family.
Cognitive and Behavioral Impairments in ALS - An Update
(Continued from Page 4)
assessment of language skills. Deficits of language can be striking in some individuals with ALS, demonstrating features of progressive
nonfluent aphasia or semantic dementia, unrelated to their motor skills.
Why are these assessments important? After all, individuals with ALS and their caregivers often are struggling to cope with a host of
physical limitations which impair independence, mobility, nutrition, and communication, and which require walkers, wheelchairs, adaptive
equipment for activities of daily living, augmentative communication devices, and modifications in diet. My personal view is that cognitive
and behavioral assessments are essential. Individuals and their families are asked to make critical decisions regarding their health care,
including decisions about feeding tubes, non-invasive ventilation, tracheostomy/mechanical ventilation, and advance directives. If cognitive
impairment is relatively common in ALS, then it is important to take this into account as these important decisions are made. We do not yet
know the best way to help individuals with ALS and their caregivers manage important decisions in the face of such cognitive and behavioral
changes, but we are designing approaches which we hope will be helpful and successful in achieving the best possible quality of life for
these individuals and their caregivers. a
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
7
Patient Profile: Larry Dodds By Rebecca Unger
Phillies Phestival Raises a Record $720,056 to Help Strike out ALS
W
U
hen you ask Larry Dodds about his life, he will most
likely have a lot to share with you. And with good
reason: he has a lot to talk about! He and his wife, Lois,
have been married for over 47 years. They have three
children and eight grandchildren to whom they lovingly
dedicate their time.
Larry's many undertakings have allowed him to travel all
over the world. He was a Physician in the U.S. Army, and
after that a Flight Surgeon for both the presidential flight
detachment and a helicopter battalion in Vietnam. Later, he
served as a missionary in Peru with his family for twelve
years. There, he provided medical care for people
throughout the jungle area of Peru. Larry's decision to
become a missionary came at a very young age. “When I
was eight or nine years old, an aunt gave me a biography
about David Livingstone,” recalls Larry. “After reading that
book, I vowed that I would 'go to Africa and take care of
the natives'.”
When he returned to the
states, Larry worked with his
local public health department
in Southern California,
“treating tuberculosis and
other communicable
diseases.” However, he soon
became active in preventive
medicine with the belief that
“There is more to be gained
by preventing disease, than in
treating them.”
in bed. However, with a great number of caring and
supportive friends and my very patient wife, the loss of
freedom does not seem like a big issue.”
Larry and his wife still work full-time. They also run a
nonprofit organization called Heartstream Resources which
provides “spiritual, physical and emotional healing” to other
missionaries. The Chapter aids the couple in leading their
busy lives by providing equipment and an aide to assist
them. Also, he adds, “The ALS clinic at the Hershey
Medical Center has been a godsend because of all the
expertise in one place. For a complex condition such as
ALS, a specialized clinic where the various consultants can
confer with each other immediately is a great boon to the
patient. We have felt very cared for there!”
nder brilliant skies and a cool
breeze, a record $720,056 was
raised at the May 21st 18th Annual
Phillies Phestival at Citizens Bank
Park. This figure surpassed last year's
total by over $48,000. The top live
auction bid of the evening, $5,400,
went for the use of Pat Burrell's ball
In April 2007, Larry was selected as a recipient of the
Harrisburg chapter of the United Way's Essence of Humanity
Award for his exemplary volunteer work. Larry believes that
helping others enables him to
keep a positive outlook and
Larry, with his wife, Lois (standing),
“fully engages” him in life.
receives the United Way's Essence
of Humanity Award from ABC 27's
Valerie Pritchett.
However, some diseases are
not preventable as Larry
experiences in his every day
life. He was diagnosed with
ALS in September of 1999
and prostate cancer in 2001. His life has changed,
but gradually, allowing him time to adjust. He
tires more easily and relies on a wheelchair, but
his voice is still strong. “Being a physician
enables me to understand the physiologic
process and changes,” Larry admits, “but I
think nothing can prepare you for what it is
like to live with a gradual loss of freedom
such as scratching my nose or turning over
Moreover, he draws his
strength from his faith in God,
keeping a sense of humor, and
making sure to take time for
those things he considers
pleasurable: “music, films,
tasty food, chocolate, and
good friends.” a
“When I was
eight or nine years old,
an aunt gave me a biography
about David Livingstone…
After reading that book,
I vowed that I would
'go to Africa and take care
of the natives'.”
Pitcher Geoff Geary, who lost a dear friend to
ALS, greets PALS Scott Mackler at the Phestival.
park suite, followed by a bid of
$4,100 for Ryan Howard's gameused home jersey from his 2006 MVP
season. Three photo booths featuring
Pat Burrell, Ryan Howard and Chase
Utley were all a sell-out at the 4,000
plus fan event.
introduced by emcee Scott Palmer
prior to the live auction. They helped
the Phillies Wives and Ball Girls model
live auction items and served to
remind the crowd of the importance of
their bids. The live auction, which was
also strengthened by the stellar
auctioneering skills of volunteer
Jonathan Freeman of Freeman's,
raised $68,950. The silent auction
raised a record $41,366. Two chairs
used in the Veterans Stadium
Executive Dining Room received the
top silent auction bid of $3,500.
The program book was our largest
ever and topped the scales with a
record $174,000 in ad sales.
Program Book Chair Marcy Cardonick
and Vice Chair Jack Donnelly
spearheaded a hard-working volunteer
committee. Sponsorship was up too, as
Citi Smith Barney marked its 12th year
as Grand Slam Sponsor. All-Star
Sponsor Comcast SportsNet broadcast
Daily News Live from the ballpark.
Program book chair Marcy Cardonick on the
field with pitcher Cole Hamels.
Outfielder Shane Victorino perfectly
reminisced about the evening, “It does
make you appreciate things more. But
looking at how positive these people
are is also an inspiration. You realize
you can't take your life for granted. At
the same time, you feel good because
you're helping people less fortunate
than yourself. It's all about them."a
Since the Phillies adopted our Chapter
as its primary charity in 1984, the
team has raised over $9.4 million for
ALS. The entire Phillies organization
was on hand to join in the fight
against Lou Gehrig's Disease.
Three PALS (people with ALS), Scott
Mackler, MD, PhD, Cheryl Connolly
and Marla Broughton, were
Shane Victorino (right) and Antonio Alfonseca prepare to sign autographs in sponsor
Thriftway Shop n Bag's photo booth.
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
9
Patient Profile: Larry Dodds By Rebecca Unger
Phillies Phestival Raises a Record $720,056 to Help Strike out ALS
W
U
hen you ask Larry Dodds about his life, he will most
likely have a lot to share with you. And with good
reason: he has a lot to talk about! He and his wife, Lois,
have been married for over 47 years. They have three
children and eight grandchildren to whom they lovingly
dedicate their time.
Larry's many undertakings have allowed him to travel all
over the world. He was a Physician in the U.S. Army, and
after that a Flight Surgeon for both the presidential flight
detachment and a helicopter battalion in Vietnam. Later, he
served as a missionary in Peru with his family for twelve
years. There, he provided medical care for people
throughout the jungle area of Peru. Larry's decision to
become a missionary came at a very young age. “When I
was eight or nine years old, an aunt gave me a biography
about David Livingstone,” recalls Larry. “After reading that
book, I vowed that I would 'go to Africa and take care of
the natives'.”
When he returned to the
states, Larry worked with his
local public health department
in Southern California,
“treating tuberculosis and
other communicable
diseases.” However, he soon
became active in preventive
medicine with the belief that
“There is more to be gained
by preventing disease, than in
treating them.”
in bed. However, with a great number of caring and
supportive friends and my very patient wife, the loss of
freedom does not seem like a big issue.”
Larry and his wife still work full-time. They also run a
nonprofit organization called Heartstream Resources which
provides “spiritual, physical and emotional healing” to other
missionaries. The Chapter aids the couple in leading their
busy lives by providing equipment and an aide to assist
them. Also, he adds, “The ALS clinic at the Hershey
Medical Center has been a godsend because of all the
expertise in one place. For a complex condition such as
ALS, a specialized clinic where the various consultants can
confer with each other immediately is a great boon to the
patient. We have felt very cared for there!”
nder brilliant skies and a cool
breeze, a record $720,056 was
raised at the May 21st 18th Annual
Phillies Phestival at Citizens Bank
Park. This figure surpassed last year's
total by over $48,000. The top live
auction bid of the evening, $5,400,
went for the use of Pat Burrell's ball
In April 2007, Larry was selected as a recipient of the
Harrisburg chapter of the United Way's Essence of Humanity
Award for his exemplary volunteer work. Larry believes that
helping others enables him to
keep a positive outlook and
Larry, with his wife, Lois (standing),
“fully engages” him in life.
receives the United Way's Essence
of Humanity Award from ABC 27's
Valerie Pritchett.
However, some diseases are
not preventable as Larry
experiences in his every day
life. He was diagnosed with
ALS in September of 1999
and prostate cancer in 2001. His life has changed,
but gradually, allowing him time to adjust. He
tires more easily and relies on a wheelchair, but
his voice is still strong. “Being a physician
enables me to understand the physiologic
process and changes,” Larry admits, “but I
think nothing can prepare you for what it is
like to live with a gradual loss of freedom
such as scratching my nose or turning over
Moreover, he draws his
strength from his faith in God,
keeping a sense of humor, and
making sure to take time for
those things he considers
pleasurable: “music, films,
tasty food, chocolate, and
good friends.” a
“When I was
eight or nine years old,
an aunt gave me a biography
about David Livingstone…
After reading that book,
I vowed that I would
'go to Africa and take care
of the natives'.”
Pitcher Geoff Geary, who lost a dear friend to
ALS, greets PALS Scott Mackler at the Phestival.
park suite, followed by a bid of
$4,100 for Ryan Howard's gameused home jersey from his 2006 MVP
season. Three photo booths featuring
Pat Burrell, Ryan Howard and Chase
Utley were all a sell-out at the 4,000
plus fan event.
introduced by emcee Scott Palmer
prior to the live auction. They helped
the Phillies Wives and Ball Girls model
live auction items and served to
remind the crowd of the importance of
their bids. The live auction, which was
also strengthened by the stellar
auctioneering skills of volunteer
Jonathan Freeman of Freeman's,
raised $68,950. The silent auction
raised a record $41,366. Two chairs
used in the Veterans Stadium
Executive Dining Room received the
top silent auction bid of $3,500.
The program book was our largest
ever and topped the scales with a
record $174,000 in ad sales.
Program Book Chair Marcy Cardonick
and Vice Chair Jack Donnelly
spearheaded a hard-working volunteer
committee. Sponsorship was up too, as
Citi Smith Barney marked its 12th year
as Grand Slam Sponsor. All-Star
Sponsor Comcast SportsNet broadcast
Daily News Live from the ballpark.
Program book chair Marcy Cardonick on the
field with pitcher Cole Hamels.
Outfielder Shane Victorino perfectly
reminisced about the evening, “It does
make you appreciate things more. But
looking at how positive these people
are is also an inspiration. You realize
you can't take your life for granted. At
the same time, you feel good because
you're helping people less fortunate
than yourself. It's all about them."a
Since the Phillies adopted our Chapter
as its primary charity in 1984, the
team has raised over $9.4 million for
ALS. The entire Phillies organization
was on hand to join in the fight
against Lou Gehrig's Disease.
Three PALS (people with ALS), Scott
Mackler, MD, PhD, Cheryl Connolly
and Marla Broughton, were
Shane Victorino (right) and Antonio Alfonseca prepare to sign autographs in sponsor
Thriftway Shop n Bag's photo booth.
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
9
2007 Walks To D’Feet ALS® http://walk.alsphiladelphia.org
2007 Seaside Board…Walk to
D'Feet ALS® May 19, 2007
Angel Annie, the highest school fundraising team, poses for a moment
before walking.(left) Other top fundraising teams included: Renascent
Group (1st place), Rube's Team (2nd place) and Carlson's Roughriders
(3rd place) and Little Rock Travelers Highest Non-Family based Team.
The highest fundraising individual was Mike Rubbinaccio.
2007 Bucks County
Walk to D'Feet ALS®
April 21, 2007
T
remendous! Is one way to sum up the 2007 Bucks County Walk to
D'Feet ALS® held at the Oxford Valley Mall on Saturday, April 21,
2007. This year's walk blew the doors off the goal of $120,000 by
raising over $170,000. Top teams, Legs 4 Greg, Denise's Dream Team,
Polecat's Pirates, Ray's Hope and Wolfie's Warriors raised a combined total
of over $90,000. Congressman Patrick Murphy helped to cut the ribbon
and NBC 10 meteorologist Bill Henley introduced walk teams. A special
thank you to Walk Chairs Denise and Cliff Naylor, Team Chair Joyce
Walk chairs, Mike Rubbinaccio and Allison Leiter, along with PALS
Jack Daily cut the ribbon to begin the Walk.(right) This year's Walk
raised over $164,000 and had more than 825 walkers participate.
Once again cast members from the popular HBO series The Sopranos
visited the Walk to sign autographs and pose for pictures. Special
thanks to Tony Sirico, Max Casella, Dan Grimaldi and Jeff Marchetti for
generously donating their time in memory of Paul "Blackie" Rubbinaccio.
2007
Harrisburg
Walk to
D'Feet ALS®
Naylor and the wonderful committee behind this walk. Keep your eyes
open for next year's exciting event… walk, shop and help strikeout ALS!
Upcoming Walks To D’Feet ALS®
2007 Ocean City Board…
Walk to D’Feet ALS®
2007 Lehigh Valley
Walk to D’Feet ALS®
Presented by CertainTeed Corporation
Saturday, September 29, 2007
6th Street and the Boardwalk
Ocean City, NJ
Saturday, October 20, 2007
Lehigh Valley College
Center Valley, PA
Registration: 9:00 a.m.
Walk Starts: 10:00 a.m.
June 9, 2007
This year's walk had a new twist! Walkers joined together in the stands of the Harrisburg Senators stadium on City Island to kickoff this
For more information about forming
a team or joining the Walk committee,
contact Julie McKeever at
1-877-GEHRIG-1 or e-mail at
[email protected].
Registration: 9:00 a.m.
Walk Starts: 10:00 a.m.
For more information about forming
a team or joining the Walk committee,
contact Allison Walker at
1-877-GEHRIG-1 or e-mail at
[email protected].
2007 Greater
Philadelphia Walk
to D’Feet ALS®
Saturday, November 10, 2007
Valley Forge Military Academy & College
Wayne, PA
Registration: 10:00 a.m.
Walk Starts: 11:00 a.m.
For more information about forming
a team or joining the Walk committee,
contact Allison Walker at
1-877-GEHRIG-1 or e-mail at
[email protected].
beautiful event. ABC 27 meteorologist Chuck Rhodes and the River/97.3's own Chris Tyler took charge of introducing over 63 teams who
joined together to raise over $190,000. Top teams Pam's Pals, Gordie's Groupies, Big Daddy's Bunch and A Team Effort took home the fund
raising awards! Thank you to big sponsors Burgess McCormac Foundation and Momentum Fitness Center. A special thank you to Walk Chair
Leighann Moll, the entire committee and wonderful volunteers for a job well done. Join us next year for this heart warming event!
Some Creative Team Fundraising Ideas in Harrisburg....
•The Grateful Dudes, decked out in Tye Dye shirts, used a very creative idea
to raise money! The team created "The Grateful Cookbook" compiled of
recipes from friends, family and other team captains and PALS from the
Harrisburg area. The effort has raised over $11,000 so far! The colorful and
complete cookbook is still on sale, $10 plus shipping. Please contact Connie
Fickes at 717-755-5415 or [email protected]
•The golfers to the right participated in the
2nd Annual Larry Goodwin Memorial Golf
Tournament held on Saturday, June 2nd. The event raised over $2,000 for their team, Goodwin Gliders.
A special thank you to Fred Menke and Melissa Goodwin Menke for organizing the event.
•Jeff's Jammers set up a table at a local event to sell bracelets and raise money and awareness for ALS!
We Thank Our Walk Sponsors
Asbury United Methodist Church
Atlantic Central Bankers Bank
Bayer
Bonita/Pacific Fruit
Brinker Capital, Inc.
Gerard and Mary Cleary
Clyde Stumpf & Son
Commerce Bank
Presenting Sponsor of the Ocean City
Board…Walk to D'Feet ALS® —CertainTeed Corporation
Excel Interior Concepts
& Construction
Fox Subacute Management, Inc.
GRISWOLD SPECIAL CARE, Inc.
Dean & Maryann Janeway
Joseph P. Cohill, CPA
Kenneth & Co./Tips 2 Toes
Lehigh Valley Dairies
The Martin Family
Momentum Fitness Center
Neutrik, USA
Rave Motion Pictures
Scherline & Associates,
Attorneys at Law
Twin Oaks bloc, Inc.
Turkey Hill Minit Markets
Waddell & Reed
Wakefern Food Corporation
Our sponsors help make our Walks to D'Feet ALS® a success!
To learn more about the benefits of becoming a walk sponsor,
please contact Allison Walker or Julie McKeever at 215-643-5434 or toll-free 1-877-GEHRIG-1.
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
11
2007 Walks To D’Feet ALS® http://walk.alsphiladelphia.org
2007 Seaside Board…Walk to
D'Feet ALS® May 19, 2007
Angel Annie, the highest school fundraising team, poses for a moment
before walking.(left) Other top fundraising teams included: Renascent
Group (1st place), Rube's Team (2nd place) and Carlson's Roughriders
(3rd place) and Little Rock Travelers Highest Non-Family based Team.
The highest fundraising individual was Mike Rubbinaccio.
2007 Bucks County
Walk to D'Feet ALS®
April 21, 2007
T
remendous! Is one way to sum up the 2007 Bucks County Walk to
D'Feet ALS® held at the Oxford Valley Mall on Saturday, April 21,
2007. This year's walk blew the doors off the goal of $120,000 by
raising over $170,000. Top teams, Legs 4 Greg, Denise's Dream Team,
Polecat's Pirates, Ray's Hope and Wolfie's Warriors raised a combined total
of over $90,000. Congressman Patrick Murphy helped to cut the ribbon
and NBC 10 meteorologist Bill Henley introduced walk teams. A special
thank you to Walk Chairs Denise and Cliff Naylor, Team Chair Joyce
Walk chairs, Mike Rubbinaccio and Allison Leiter, along with PALS
Jack Daily cut the ribbon to begin the Walk.(right) This year's Walk
raised over $164,000 and had more than 825 walkers participate.
Once again cast members from the popular HBO series The Sopranos
visited the Walk to sign autographs and pose for pictures. Special
thanks to Tony Sirico, Max Casella, Dan Grimaldi and Jeff Marchetti for
generously donating their time in memory of Paul "Blackie" Rubbinaccio.
2007
Harrisburg
Walk to
D'Feet ALS®
Naylor and the wonderful committee behind this walk. Keep your eyes
open for next year's exciting event… walk, shop and help strikeout ALS!
Upcoming Walks To D’Feet ALS®
2007 Ocean City Board…
Walk to D’Feet ALS®
2007 Lehigh Valley
Walk to D’Feet ALS®
Presented by CertainTeed Corporation
Saturday, September 29, 2007
6th Street and the Boardwalk
Ocean City, NJ
Saturday, October 20, 2007
Lehigh Valley College
Center Valley, PA
Registration: 9:00 a.m.
Walk Starts: 10:00 a.m.
June 9, 2007
This year's walk had a new twist! Walkers joined together in the stands of the Harrisburg Senators stadium on City Island to kickoff this
For more information about forming
a team or joining the Walk committee,
contact Julie McKeever at
1-877-GEHRIG-1 or e-mail at
[email protected].
Registration: 9:00 a.m.
Walk Starts: 10:00 a.m.
For more information about forming
a team or joining the Walk committee,
contact Allison Walker at
1-877-GEHRIG-1 or e-mail at
[email protected].
2007 Greater
Philadelphia Walk
to D’Feet ALS®
Saturday, November 10, 2007
Valley Forge Military Academy & College
Wayne, PA
Registration: 10:00 a.m.
Walk Starts: 11:00 a.m.
For more information about forming
a team or joining the Walk committee,
contact Allison Walker at
1-877-GEHRIG-1 or e-mail at
[email protected].
beautiful event. ABC 27 meteorologist Chuck Rhodes and the River/97.3's own Chris Tyler took charge of introducing over 63 teams who
joined together to raise over $190,000. Top teams Pam's Pals, Gordie's Groupies, Big Daddy's Bunch and A Team Effort took home the fund
raising awards! Thank you to big sponsors Burgess McCormac Foundation and Momentum Fitness Center. A special thank you to Walk Chair
Leighann Moll, the entire committee and wonderful volunteers for a job well done. Join us next year for this heart warming event!
Some Creative Team Fundraising Ideas in Harrisburg....
•The Grateful Dudes, decked out in Tye Dye shirts, used a very creative idea
to raise money! The team created "The Grateful Cookbook" compiled of
recipes from friends, family and other team captains and PALS from the
Harrisburg area. The effort has raised over $11,000 so far! The colorful and
complete cookbook is still on sale, $10 plus shipping. Please contact Connie
Fickes at 717-755-5415 or [email protected]
•The golfers to the right participated in the
2nd Annual Larry Goodwin Memorial Golf
Tournament held on Saturday, June 2nd. The event raised over $2,000 for their team, Goodwin Gliders.
A special thank you to Fred Menke and Melissa Goodwin Menke for organizing the event.
•Jeff's Jammers set up a table at a local event to sell bracelets and raise money and awareness for ALS!
We Thank Our Walk Sponsors
Asbury United Methodist Church
Atlantic Central Bankers Bank
Bayer
Bonita/Pacific Fruit
Brinker Capital, Inc.
Gerard and Mary Cleary
Clyde Stumpf & Son
Commerce Bank
Presenting Sponsor of the Ocean City
Board…Walk to D'Feet ALS® —CertainTeed Corporation
Excel Interior Concepts
& Construction
Fox Subacute Management, Inc.
GRISWOLD SPECIAL CARE, Inc.
Dean & Maryann Janeway
Joseph P. Cohill, CPA
Kenneth & Co./Tips 2 Toes
Lehigh Valley Dairies
The Martin Family
Momentum Fitness Center
Neutrik, USA
Rave Motion Pictures
Scherline & Associates,
Attorneys at Law
Twin Oaks bloc, Inc.
Turkey Hill Minit Markets
Waddell & Reed
Wakefern Food Corporation
Our sponsors help make our Walks to D'Feet ALS® a success!
To learn more about the benefits of becoming a walk sponsor,
please contact Allison Walker or Julie McKeever at 215-643-5434 or toll-free 1-877-GEHRIG-1.
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
11
Recent Events Spring 2007
ALS Charity Auction & Autograph
Party with the Lakewood BlueClaws
ALS Express
Finnigan’s
Saturday, June 23, 2007
May 23, 2007
M
embers of the 2006 South Atlantic League Champion Lakewood BlueClaws
put down their baseball bats and picked up serving trays to help out at the
ALS Charity Auction and Autograph Party with the Lakewood BlueClaws at
Finnigan's on May 23rd. The annual event includes a great silent auction, raffles
and a competition to see which player can get the biggest tip. Lucky fans also got
the opportunity to bowl with the players. All members of the team including the
coaching staff came out to support the ALS Association by serving drinks, waiting
tables and signing autographs. This year's event raised $8,500. Special thanks to
Jim DeAngelis of the Lakewood BlueClaws for organizing the event as well as to
Tom Gibson at Finnigan's for hosting the event.
Fifth Annual Scrum for Six
Rugby Tournament
On Saturday, May 5th the fifth annual “Scrum for Six” rugby
tournament was hosted by the Michael Bartone Memorial Fund
Committee. By all accounts, this year's event was the best ever and
raised $11,000 for ALS research. Committee member Dom
Bartone, brother of Michael, said that being …”part of the fight
[against ALS] makes us feel good.” Since its inception, the Scrum
for Six has raised over $51,000. The committee also hosts a golf
event and a dinner dance in the fall. For more information check
the Chapter website.
Fifth Annual Pasta for PALS
The spring sun shone brightly on the Fifth Annual Pasta for PALS
fundraiser hosted by the Zimmerman Family Love Fund in
conjunction with Dafnos Restaurant in Hershey, Pennsylvania. This
annual event is held to support research done at the Hershey ALS
clinic and Motor Neuron Disease Research Program. This event is
famous not only for the wonderful food but also the volunteer
servers! These friends and families of current and former PALS put
on aprons and wait tables, wash dishes and sell raffle tickets, all for
ALS research. We are grateful to the Zimmermans, all the
volunteers and Dafnos for their ongoing generous support.
Billy Lake Basketball Marathon
Takes Off
Monsignor Bonner High School, Drexel Hill, PA
Ending at Morey’s Piers
Wildwood, NJ
The 9th Annual ALS Express Bike Ride took place on
Saturday, June 23 with over 400 riders who cycled
in beautiful weather to Wildwood. Riders made
their way from 75, 50 and 25 mile start points
throughout New Jersey ending their excursion in
Wildwood at Morey’s Piers. This event raised over
$112,000. A special thanks to Bike Line, Morey’s
Piers, Dei Lynam for kicking off the ride and The
Eileen Frank ALS Foundation for organizing another
great event!
Upcoming Events
Codorus State Park
Hanover, PA
Sunday, September 9, 2007
The 7th Annual Gino's Race will take place on Sunday,
September 9th at 9:00am. The Duathlon, consisting of a 4
mile run and 14 mile bike ride, will be held once again at
Codorus State Park in Hanover, PA. Pre-registration is $25
and $35 for race day. Contact Rod Young for more
information: [email protected] or 717-225-5257.
KAK CUP
Makefield Highlands Golf Course
Yardley, PA
The ALS Celebrity Team put in a great game against the Lake Team on
Friday, September 21, 2007
Saturday, June 23 at the 16th Annual Billy Lake Memorial ALS
Basketball Marathon at Monsignor Bonner High School in Drexel Hill,
PA. Thanks to the generous support of hundreds, the Lake events have
raised more than hundreds of thousands of dollars for ALS research
and education grants. A new team led by Jay Scott, father of Alex of
“Alex's Lemonade Stand” played the Saturday 9 am game. Their
participation was particularly meaningful as one important charity
supports another. Thank you to the Lake friends and family and especially to Jeff Fox who not only played, but pinched hit as Coach and his
celebrity team of Jamie Apody, Michael Barkann, Bruce Berkowitz, Doug Kammerer, Mike Kern, Mike Melcher, Larry Mendte, Andy Reilly,
CURT SCHILLING
GOLF OUTING
Monday, November 5, 2007
Green Valley Country Club
& Whitemarsh Country Club
Gino's Race
June 23, 2007
Save the Date
14th Annual Curt Schilling ALS Golf Outing
will be making some changes this year!
After many years at the same course this
year's outing will move to Green Valley
Country Club and Whitemarsh Valley
Country Club on Monday, November 5,
2007. Golfers will enjoy food, cocktails and
dessert with Curt back at Green Valley after
a day of golf! For more information about
the event please contact Julie McKeever at
215-643-5434 ext 26 or
[email protected]
Mackler Run
The 7th Annual KAK Cup Golf Outing will take place on
Friday, September 21, 2007 at Makefield Highlands Golf
Course, Yardley, PA. Registration begins at 11:30, Shotgun
start at 12:30, Dinner & Auction to follow. Price: $150 per
golfer, includes golf greens fees and cart, light lunch, dinner
& drinks; $25.00 dinner only. For more information please
contact Cyndee Ward 215-428-3754 or via email at
[email protected]
Temple Beth El
Newark, DE
Sunday, October 7, 2007
8th Annual Scott Mackler 5K Run/Walk will be held once
again at Temple Beth El in Newark, DE on Sunday,
October 7, 2007. Pre-registration is $20 and $25 for day
of event. For more information please contact Joe Sontowski
at 302-633-1208 or [email protected]
Anthony SanFilippo (who recruited four players!), Brian Startare, Megan Vetter and Dave Warren.
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
13
Recent Events Spring 2007
ALS Charity Auction & Autograph
Party with the Lakewood BlueClaws
ALS Express
Finnigan’s
Saturday, June 23, 2007
May 23, 2007
M
embers of the 2006 South Atlantic League Champion Lakewood BlueClaws
put down their baseball bats and picked up serving trays to help out at the
ALS Charity Auction and Autograph Party with the Lakewood BlueClaws at
Finnigan's on May 23rd. The annual event includes a great silent auction, raffles
and a competition to see which player can get the biggest tip. Lucky fans also got
the opportunity to bowl with the players. All members of the team including the
coaching staff came out to support the ALS Association by serving drinks, waiting
tables and signing autographs. This year's event raised $8,500. Special thanks to
Jim DeAngelis of the Lakewood BlueClaws for organizing the event as well as to
Tom Gibson at Finnigan's for hosting the event.
Fifth Annual Scrum for Six
Rugby Tournament
On Saturday, May 5th the fifth annual “Scrum for Six” rugby
tournament was hosted by the Michael Bartone Memorial Fund
Committee. By all accounts, this year's event was the best ever and
raised $11,000 for ALS research. Committee member Dom
Bartone, brother of Michael, said that being …”part of the fight
[against ALS] makes us feel good.” Since its inception, the Scrum
for Six has raised over $51,000. The committee also hosts a golf
event and a dinner dance in the fall. For more information check
the Chapter website.
Fifth Annual Pasta for PALS
The spring sun shone brightly on the Fifth Annual Pasta for PALS
fundraiser hosted by the Zimmerman Family Love Fund in
conjunction with Dafnos Restaurant in Hershey, Pennsylvania. This
annual event is held to support research done at the Hershey ALS
clinic and Motor Neuron Disease Research Program. This event is
famous not only for the wonderful food but also the volunteer
servers! These friends and families of current and former PALS put
on aprons and wait tables, wash dishes and sell raffle tickets, all for
ALS research. We are grateful to the Zimmermans, all the
volunteers and Dafnos for their ongoing generous support.
Billy Lake Basketball Marathon
Takes Off
Monsignor Bonner High School, Drexel Hill, PA
Ending at Morey’s Piers
Wildwood, NJ
The 9th Annual ALS Express Bike Ride took place on
Saturday, June 23 with over 400 riders who cycled
in beautiful weather to Wildwood. Riders made
their way from 75, 50 and 25 mile start points
throughout New Jersey ending their excursion in
Wildwood at Morey’s Piers. This event raised over
$112,000. A special thanks to Bike Line, Morey’s
Piers, Dei Lynam for kicking off the ride and The
Eileen Frank ALS Foundation for organizing another
great event!
Upcoming Events
Codorus State Park
Hanover, PA
Sunday, September 9, 2007
The 7th Annual Gino's Race will take place on Sunday,
September 9th at 9:00am. The Duathlon, consisting of a 4
mile run and 14 mile bike ride, will be held once again at
Codorus State Park in Hanover, PA. Pre-registration is $25
and $35 for race day. Contact Rod Young for more
information: [email protected] or 717-225-5257.
KAK CUP
Makefield Highlands Golf Course
Yardley, PA
The ALS Celebrity Team put in a great game against the Lake Team on
Friday, September 21, 2007
Saturday, June 23 at the 16th Annual Billy Lake Memorial ALS
Basketball Marathon at Monsignor Bonner High School in Drexel Hill,
PA. Thanks to the generous support of hundreds, the Lake events have
raised more than hundreds of thousands of dollars for ALS research
and education grants. A new team led by Jay Scott, father of Alex of
“Alex's Lemonade Stand” played the Saturday 9 am game. Their
participation was particularly meaningful as one important charity
supports another. Thank you to the Lake friends and family and especially to Jeff Fox who not only played, but pinched hit as Coach and his
celebrity team of Jamie Apody, Michael Barkann, Bruce Berkowitz, Doug Kammerer, Mike Kern, Mike Melcher, Larry Mendte, Andy Reilly,
CURT SCHILLING
GOLF OUTING
Monday, November 5, 2007
Green Valley Country Club
& Whitemarsh Country Club
Gino's Race
June 23, 2007
Save the Date
14th Annual Curt Schilling ALS Golf Outing
will be making some changes this year!
After many years at the same course this
year's outing will move to Green Valley
Country Club and Whitemarsh Valley
Country Club on Monday, November 5,
2007. Golfers will enjoy food, cocktails and
dessert with Curt back at Green Valley after
a day of golf! For more information about
the event please contact Julie McKeever at
215-643-5434 ext 26 or
[email protected]
Mackler Run
The 7th Annual KAK Cup Golf Outing will take place on
Friday, September 21, 2007 at Makefield Highlands Golf
Course, Yardley, PA. Registration begins at 11:30, Shotgun
start at 12:30, Dinner & Auction to follow. Price: $150 per
golfer, includes golf greens fees and cart, light lunch, dinner
& drinks; $25.00 dinner only. For more information please
contact Cyndee Ward 215-428-3754 or via email at
[email protected]
Temple Beth El
Newark, DE
Sunday, October 7, 2007
8th Annual Scott Mackler 5K Run/Walk will be held once
again at Temple Beth El in Newark, DE on Sunday,
October 7, 2007. Pre-registration is $20 and $25 for day
of event. For more information please contact Joe Sontowski
at 302-633-1208 or [email protected]
Anthony SanFilippo (who recruited four players!), Brian Startare, Megan Vetter and Dave Warren.
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
13
Patient Services
IN MEMORIAM
Linvilla Orchards
Media, PA
ANNUAL TRIP TO LONGWOOD GARDENS
September 30, 2007
The Longwood Gardens trip on Sunday, May 6, 2007
had an excellent attendance of over 120 patients
and family members. This is one of the most popular
annual Patient Services outings.
The Patient Services division is planning an outing this Fall to Linvilla Orchards in Media, PA.
Patients and their families will have the opportunity to be at the orchards on Sunday,
September 30, 2007. For further information, please contact Nilda Mallatratt, Patient
Services Assistant at 215-643-5434 or [email protected].
Respiratory Interventions
for Individuals with ALS
Desmond Hotel, Malvern, PA
October 2, 2007
The Patient Services division will sponsor the annual “Respiratory Interventions for Individuals
with ALS” on Tuesday, October 2, 2007 from 9am-3pm at the Desmond Hotel in Malvern, PA.
For further information regarding this event, please contact Nilda Mallatratt, Patient Services
Assistant at 215-643-5434 or [email protected].
PROFESSIONAL STAFF
Resource Groups
his is a general listing of our Resource Groups. We warmly invite people with ALS, and their families and friends, to attend.
Please call the contact person for each group to confirm actual dates, or you may request to be placed on the Resource Group
mailing list. This mailing is distributed monthly and lists upcoming dates, times, and other important information. Also, be sure
to RSVP to the facilitator, if specifically requested.
Caregivers and Family MembersAmbler, PA
Info. and RSVP:
Karen Dawson-Haines,
(215) 487-4519
Delaware - Wilmington, DE
Info: Wendy Strowhouer, RN
(302) 547-8482
STAFF NURSE
Christine D’Angelo, RN, BSN
DIRECTOR OF PATIENT SERVICES
Brenda Edelman, LCSW, BCD
SOCIAL WORKERS
Wendy Barnes, MSW, LSW
Shelley S. Hill, MSW, LCSW
Susan Schwartz, ACSW, LSW
DIRECTOR OF ADMINISTRATION
Jeanne A. Johnson
T
Bereavement - Ambler, PA
A five-session series is available
for people who have lost someone
to ALS in the past 2 years.
Info. and RSVP:
Jennifer Klapper,
(215) 726-8724
EXECUTIVE DIRECTOR
James V. Pinciotti
CHIEF DEVELOPMENT OFFICER
Jeff Cline
NURSE COUNSELOR
Jennifer Klapper, APRN, BC
Harrisburg - Hershey, PA
Info.: Judy Lyter,
(717) 657-5352
Philadelphia - Bala Cynwyd, PA
Info.: Karen Dawson-Haines
(215) 487-4519
ASSISTIVE TECHNOLOGY
SPECIALIST
Alisa Brownlee, ATP
Lehigh Valley - Allentown, PA
Info.: Wendy Barnes,
(610) 282-5904
South JerseyEgg Harbor Township, NJ
Info.: Stephanie HandKowchak, MSW, LSW
(609) 457-9261
COMMUNICATIONS MANAGER
Jenny Ruth
North Central - Danville, PA
Info. and RSVP:
Peggy Slusser, PhD, RN, CS,
(570) 793-3906
North East - Moosic, PA
Info. and RSVP:
Peggy Slusser, PhD, RN, CS,
(570) 793-3906
Trenton - Lawrenceville, NJ
Info.: Cathe Frierman,
(609) 394-3556
Monmouth/ Ocean CountyRed Bank, NJ
Info: Patricia Schaeffer, RN
(732) 450-2677
REGIONAL NURSE
COORDINATORS
Gail Houseman, RN, APRN, MSN
Paula Rich, RN, MSN
Sue Walsh, RN, MSN, CS
EVENT MANAGER
Allison Walker
ADMINISTRATIVE STAFF
Mary Dittmar
Patient Services Clerical Assistant
April Haas
Development Assistant
Nilda Mallatratt
Patient Services Assistant
Mary Sharp
Receptionist/Office Assistant
EVENT COORDINATOR
Julie Morrison McKeever
Maryann Vagnoni
Executive Assistant
EVENT SPECIALIST
Marianne Mancini
DEVELOPMENT COORDINATOR
Joan Borowsky
TRANSPORTATION VAN DRIVERS
John Conner
Thomas R. Mitchell
Gerry Neal
INFORMATION TECHNOLOGY
MANAGER
Nora Isaac
FINANCE STAFF
Erin Farrell
Accounts Payable Specialist
MANAGER OF
SPONSOR RELATIONS
Roxanne Walter
Nichole Hayward
Steve Holt,
Accounts Receivable Clerks
Heather Pecharo
Accounts Receivable Specialist
Volunteers
We Couldn’t Do It
Without Them!
Maurice Alexander
Grant Barner
Joseph Borowski
John Callaghan
Frances Chuba
Andrew Cisney
Sherwood Cohen
Richard Costello
Charles Crile
Daniel Dervin
Joseph DiMatteo
Nancy Eysaldt
Susan Ferver
Sandra Gaugher
H. Robert Gibson
Luis Guzman
Jacqueline Hacker
Joanne Harrison
Melvin Hendrix
Walter Stan Hunter
Robert Jordan
Mary Karcewski
Samuel Katz
Loretta Keeley
Jackie Kerrigan
Glenn D. Kimmel
Elizabeth Ann Klein
Virginia Kocher
Paul Krick
David Laux
Alice Lolli
Elizabeth Lucius
Ida Lupica
Robert Mackley
Kenneth Malone
Will Marvel
Mary Matty
Iva McCartney
Leslie McCook
Marianne McEvoy
Roberta McMaster
Patricia Memoli
Nicholas Micolucci
Mary Miketta
Irene Montalbano
Rosemary Muldoon
Harry Newell
Mary Quagliato
Felicita Quiles
Frances Regan
Marie Rieve
Gary Sandrow
Lillian Saravitz
Russell Schaedler
Janet Silver
Joseph G. Smith
Mary Ellen Stahl
Mary Takacs
Erich Tauchert
Elizabeth Tonelis
Gloria Villafane
Eileen Wagner
Francis Wright, III
Patricia Young
Robert Young
William J. Zimmer
Gerald Zuch
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
15
Patient Services
IN MEMORIAM
Linvilla Orchards
Media, PA
ANNUAL TRIP TO LONGWOOD GARDENS
September 30, 2007
The Longwood Gardens trip on Sunday, May 6, 2007
had an excellent attendance of over 120 patients
and family members. This is one of the most popular
annual Patient Services outings.
The Patient Services division is planning an outing this Fall to Linvilla Orchards in Media, PA.
Patients and their families will have the opportunity to be at the orchards on Sunday,
September 30, 2007. For further information, please contact Nilda Mallatratt, Patient
Services Assistant at 215-643-5434 or [email protected].
Respiratory Interventions
for Individuals with ALS
Desmond Hotel, Malvern, PA
October 2, 2007
The Patient Services division will sponsor the annual “Respiratory Interventions for Individuals
with ALS” on Tuesday, October 2, 2007 from 9am-3pm at the Desmond Hotel in Malvern, PA.
For further information regarding this event, please contact Nilda Mallatratt, Patient Services
Assistant at 215-643-5434 or [email protected].
PROFESSIONAL STAFF
Resource Groups
his is a general listing of our Resource Groups. We warmly invite people with ALS, and their families and friends, to attend.
Please call the contact person for each group to confirm actual dates, or you may request to be placed on the Resource Group
mailing list. This mailing is distributed monthly and lists upcoming dates, times, and other important information. Also, be sure
to RSVP to the facilitator, if specifically requested.
Caregivers and Family MembersAmbler, PA
Info. and RSVP:
Karen Dawson-Haines,
(215) 487-4519
Delaware - Wilmington, DE
Info: Wendy Strowhouer, RN
(302) 547-8482
STAFF NURSE
Christine D’Angelo, RN, BSN
DIRECTOR OF PATIENT SERVICES
Brenda Edelman, LCSW, BCD
SOCIAL WORKERS
Wendy Barnes, MSW, LSW
Shelley S. Hill, MSW, LCSW
Susan Schwartz, ACSW, LSW
DIRECTOR OF ADMINISTRATION
Jeanne A. Johnson
T
Bereavement - Ambler, PA
A five-session series is available
for people who have lost someone
to ALS in the past 2 years.
Info. and RSVP:
Jennifer Klapper,
(215) 726-8724
EXECUTIVE DIRECTOR
James V. Pinciotti
CHIEF DEVELOPMENT OFFICER
Jeff Cline
NURSE COUNSELOR
Jennifer Klapper, APRN, BC
Harrisburg - Hershey, PA
Info.: Judy Lyter,
(717) 657-5352
Philadelphia - Bala Cynwyd, PA
Info.: Karen Dawson-Haines
(215) 487-4519
ASSISTIVE TECHNOLOGY
SPECIALIST
Alisa Brownlee, ATP
Lehigh Valley - Allentown, PA
Info.: Wendy Barnes,
(610) 282-5904
South JerseyEgg Harbor Township, NJ
Info.: Stephanie HandKowchak, MSW, LSW
(609) 457-9261
COMMUNICATIONS MANAGER
Jenny Ruth
North Central - Danville, PA
Info. and RSVP:
Peggy Slusser, PhD, RN, CS,
(570) 793-3906
North East - Moosic, PA
Info. and RSVP:
Peggy Slusser, PhD, RN, CS,
(570) 793-3906
Trenton - Lawrenceville, NJ
Info.: Cathe Frierman,
(609) 394-3556
Monmouth/ Ocean CountyRed Bank, NJ
Info: Patricia Schaeffer, RN
(732) 450-2677
REGIONAL NURSE
COORDINATORS
Gail Houseman, RN, APRN, MSN
Paula Rich, RN, MSN
Sue Walsh, RN, MSN, CS
EVENT MANAGER
Allison Walker
ADMINISTRATIVE STAFF
Mary Dittmar
Patient Services Clerical Assistant
April Haas
Development Assistant
Nilda Mallatratt
Patient Services Assistant
Mary Sharp
Receptionist/Office Assistant
EVENT COORDINATOR
Julie Morrison McKeever
Maryann Vagnoni
Executive Assistant
EVENT SPECIALIST
Marianne Mancini
DEVELOPMENT COORDINATOR
Joan Borowsky
TRANSPORTATION VAN DRIVERS
John Conner
Thomas R. Mitchell
Gerry Neal
INFORMATION TECHNOLOGY
MANAGER
Nora Isaac
FINANCE STAFF
Erin Farrell
Accounts Payable Specialist
MANAGER OF
SPONSOR RELATIONS
Roxanne Walter
Nichole Hayward
Steve Holt,
Accounts Receivable Clerks
Heather Pecharo
Accounts Receivable Specialist
Volunteers
We Couldn’t Do It
Without Them!
Maurice Alexander
Grant Barner
Joseph Borowski
John Callaghan
Frances Chuba
Andrew Cisney
Sherwood Cohen
Richard Costello
Charles Crile
Daniel Dervin
Joseph DiMatteo
Nancy Eysaldt
Susan Ferver
Sandra Gaugher
H. Robert Gibson
Luis Guzman
Jacqueline Hacker
Joanne Harrison
Melvin Hendrix
Walter Stan Hunter
Robert Jordan
Mary Karcewski
Samuel Katz
Loretta Keeley
Jackie Kerrigan
Glenn D. Kimmel
Elizabeth Ann Klein
Virginia Kocher
Paul Krick
David Laux
Alice Lolli
Elizabeth Lucius
Ida Lupica
Robert Mackley
Kenneth Malone
Will Marvel
Mary Matty
Iva McCartney
Leslie McCook
Marianne McEvoy
Roberta McMaster
Patricia Memoli
Nicholas Micolucci
Mary Miketta
Irene Montalbano
Rosemary Muldoon
Harry Newell
Mary Quagliato
Felicita Quiles
Frances Regan
Marie Rieve
Gary Sandrow
Lillian Saravitz
Russell Schaedler
Janet Silver
Joseph G. Smith
Mary Ellen Stahl
Mary Takacs
Erich Tauchert
Elizabeth Tonelis
Gloria Villafane
Eileen Wagner
Francis Wright, III
Patricia Young
Robert Young
William J. Zimmer
Gerald Zuch
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
15
Summer & Fall 2007 Calendar of Events
August
12th
30th Anniversary Picnic
Mermaid Lake,
Blue Bell, PA
September
7th
Michael Bartone Sixth
Annual Golf Tournament
Douglassville, PA
8th
Michael Bartone
Memorial Dinner Dance
Downingtown, PA
9th
Seventh Annual
Gino's Race
Codorus State Park,
Hanover, PA
Greater
11th & 18th
Newly Diagnosed Seminar:
Philadelphia Region
Ambler, PA
29th
2007 Ocean City Board…
Walk to D'Feet ALS®
Ocean City, NJ
19th
Lilly Pulitzer
"ALS Shop and Share"
Rolling Pines Golf Course,
Ardmore, PA
30th
ALS Family Trip
to Linvilla Orchards
Media, PA
21st
KAK Cup Golf Outing
Makefield Highlands Golf Course,
Yardley, PA
22nd
Sam Bonita Golf Outing
Rolling Pines Golf Course,
Berwick, PA
27th
Friends of John Fineran
Golf Outing
Ramblewood Country Club
Mount Laurel, NJ
25th
30th Anniversary Gala
SeaFair,
Philadelphia, PA
November
4th
14th Annual
Nurturing the Nurturer
The ACE Center,
Lafayette Hill, PA
October
2nd
Ventilator Decision
Conference
Malvern, PA
5th
Curt Schilling Golf Outing
Green Valley Country Club and
Whitemarsh Country Club, PA.
7th
8th Annual Scott Mackler
5K Run/Walk
Temple Beth El, 301 Possum Park Rd.,
Newark, DE
10th
2007 Greater Philadelphia
Walk to D'Feet ALS®
Valley Forge Military Academy,
Wayne, PA
20th
2007 Lehigh Valley
Walk to D'Feet ALS®
Center Valley, PA
Philadelphia
Chapter
news
Summer 2007
30th Anniversary
GALA
makes a
SPLASH
Mark your calendar!
Help us celebrate our 30th
Anniversary in style, with an
evening of fine art, jewelry,
and gourmet food on
Thursday, October 25, 2007.
MORE INFORMATION ON ALL OUR EVENTS, VISIT WWW.ALSPHILADELPHIA.ORG.
THIS EDITION OF ALS NEWS
is sponsored in part by
A GRANT FROM
sanofi-aventis
The ALS Association (Lou Gehrig’s Disease)
Greater Philadelphia Chapter
321 Norristown Road, Suite 260
Ambler, PA 19002-2755
T H I S I S S U E,
&
W E THANK
SALUTE
•DHL •Verizon •Skippy Peanut Butter
•CertainTeed •Neutrik USA •Bonita/Pacific Fruit
NON-PROFIT ORG. U.S.
POSTAGE
PAID
the first local viewing of this extraordinary gallery floating
art and antiques fair.
Our 30th Anniversary Gala event will be
held aboard the luxurious “SeaFair” yacht,
which docks in Philadelphia this fall. The yacht, billed as
the world's first fine art megayacht, will feature an
outstanding array of international fine art dealers and
jewelers in its 28 onboard galleries, encompassing 3 of
the yacht's 5 decks.
Shipboard exhibitors and dealers are of international caliber
in the fields of antiquities, old master paintings, 17th-19th
century decorative arts, modern and contemporary art,
textile, and antique and contemporary jewelry.
This exclusive experience is the perfect celebration of the
Chapter's 30 years of service to the ALS community
across our region. Join us for a memorable evening of
fine food, champagne and beverages, entertainment, and
Mark your calendars now and look for more information
coming soon! Sponsorships are available. Contact
Maryann Vagnoni at 215-643-5434 or
[email protected] for more information.
PERMIT NO. 215
® phone 1-877–GEHRIG–1
www.alsphiladelphia.org
WEST CHESTER, PA 19382
Join the Fun at Our 30th Anniversary Picnic
Come celebrate our 30th Anniversary at Mermaid Lake in Blue Bell, PA on August 12th from
Our mission is to lead the fight to cure and
treat ALS through global, cutting-edge research,
and to empower people with Lou Gehrig's Disease
and their families to live fuller lives by providing
them with compassionate care and support.
12:00- 6:00 p.m.! We want to share this special day with our PALS, supporters, families
and folks who have been with us since our early years. Enjoy a cookout, swimming,
waterslides, basketball, horseshoes, softball, volleyball, games and other activities. You and
your immediate family (up to 5 people) are invited. There is no charge for this event,
however RSVP is required. Please call April at 215-643-5434 ext. 42 or you can also
register online at www.alsphiladelphia.org. Deadline for registration is August 1st.
a
President’s Message . . . . . . . . . . . .p. 2
E.D.’s Musings . . . . . . . . . . . . . . . .p. 3
Neurologist’s News . . . . . . . . . . . .p. 4
Research Update . . . . . . . . . . . . .p. 5
Life Income Gift Help . . . . . . . . .p. 6
Advocacy Days . . . . . . . . . . . . . . .p. 7
Patient Profile: Larry Dodds . . . . .p. 8
Walks to D’Feet ALS® . . . .pp. 10-11
Past & Upcoming Events . .pp. 12-13
Patient Services Events/IMO pp. 14-15
Calendar of Events . . . . . . . . . . .p. 16