patient profile - The ALS Association Greater Philadelphia Chapter

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G R E AT E R P H I L A D E L P H I A C H A P T E R
“NEVER ALONE. TOGETHER IN HOPE.”
Winter 2015
PATIENT PROFILE
CRAIG COLBY
Craig and Kristen Colby say that they saved each other.
Neither could have imagined the hurdles they would face,
but those challenges only made their love stronger.
In the comics, Charlie Brown desperately wants to be
with the Little Red Haired Girl. He’d give anything to
just get a Valentine from her. Sometimes life plays out
better than art. In 1992, Craig Colby, then at an all-boys
high school, was playing the role of Charlie Brown in the
school play. A young Kristen Halaszi from a neighboring
school was in the play as the Little Red Haired Girl. It
was an experience that Craig would not forget.
However, life first imitated art. Charlie Brown did not
end up with the Red Haired Girl… at least not yet. Both
Craig and Kristen went on their separate ways. Craig,
originally from the Boston area, graduated and went
on to be a manager at a number of pizza restaurants.
A friend had moved to Hawaii to run a videography
company and encouraged Craig to come out to see
opportunities there. Craig’s father had recently passed
away and he was feeling burnt out, so he took up the
offer and moved.
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Craig began to get “‘island fever”’ in 2002 and thought
about life back on the mainland. He was watching a
video of that Charlie Brown musical with a friend and
said “I wonder whatever happened to that girl.” That led
Continued on page 8-9
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THE REAL YEAR END CHALLENGE
BOARD OF
DIRECTORS
Chair, Board of Trustees
Jeffrey L. Abrams, Esq.
Chair, Board of Overseers
Sandra Piersol
Chair Emeritus,
Board of Trustees
Benjamin S. Ohrenstein, Esq.
Chair Emeritus,
Board of Overseers
President
Ellyn C. Phillips
Vice Chair
Patricia M. Lake-Quinn
Secretaries
Sandra Piersol
Christina Martin
Treasurer
Bruce Berkowitz
Assistant Treasurer
Mom and I take
the
challenge
this year
I CHALLENGE YOU TO DONATE TO
the Ellyn fund
Dear Friends, I am highjacking my mom’s
column.
Julie Strong Karnavas
Rhoda Albom
Gila Aviram
Michael Barkann
Dominick Bartone
Julie Charlestein-Benjamin
Holly Bennett
Bradley A. Bingaman, Esq.
Ellen Brosso
Suzanne Bruce
Tony Burns
Marcy Cardonick
R. Douglas Carpenter
Ted Collins
Claire Conway
Konnie Crawford
Ann Cutler
Laurence J. Delaney
Karen Delaney Shideleff
Michele DeVicaris
Arthur R. Ersner, M.D.
Ellen B. Farber
Deborah Ann Ferreira
Lawrence Finkelstein, Esq.
Nancy Giles
Raina Gorman
Robert Goudie
Thomas H. Hipp
Mary Ruth Johnson
David Kasoff
Frank J. Kelly
James R. Koller
Robert A. Korn, Esq.
Sheila Lessin
Leonard M. Lodish
Melissa Ludwig
JoAnn Marano
Danielle Mariano
Kathryn A Meloni, Esq.
Scott Nickle
Richard P. Pirollo
Doug Proctor
Daniel Quinn
David M. Ricci
Michael Rifkin
Raymond Rose
Wesley Rose
Lisa Schwab
Dale Shimer
Suzanne Shorten, MD
Janet Unger
John Weber
Brad Wenger
Felice Wiener
Lauren
Stevenson Yacina
2
My dad died from ALS when I was three years
old. He was 36. My mom, Ellyn Phillips, was 33.
That was 30 years ago. Now I’m the same age my
mom was when my dad died. And there is still
no cure for ALS. The only memories I have of my
dad are of an inert body, either in a wheelchair
or lying in a bed. When he was diagnosed, the
doctor literally told him to “just go home and
die.” I don’t wish this on any kid. My mom, Ellyn,
along with Chapter Board, Volunteers and Staff
put The ALS Association Greater Philadelphia on
the map. You can be sure they don’t want anyone
to have to go through what my dad endured
either.
Please donate to the Ellyn fund.
Every dollar will help researchers find a cure for
the disease that has been a cloud hovering over
my entire life and provide care for hundreds who
are faced with the challenges of this disease. I
know them all too well. You can either give
on-line at www.alsphiladelphia.org/2014EllynFund
or complete the enclosed card today.
My mom made sure the loss of my dad would
be turned into a positive. And for the past 30
years she and many others have dedicated
their lives to awakening the world. My mom and
grandmother, Malvina, forged a relationship
with Nancy Giles and the Phillies that is now
celebrating its 30th anniversary. The fact that
this partnership has endured for so long and
raised millions for ALS says volumes about my
mom’s integrity, grit and love.
My single goal…eliminate ALS. Remember the
ICE BUCKET CHALLENGE? I joined Taylor Swift,
Bill Gates and Oprah and dumped ice for ALS.
executive director JIM PINCIOTTI
Another year has come to an end (our
accounting year ends on January 31), and
what an amazing, phenomenal, crazy year it
was. The ALS Association was the beneficiary
of one of the largest social media events that
has ever taken place. It is almost impossible
to find someone who did not participate
in dumping a bucket of ice water in support of our mission.
Google has stated that “Ice Bucket Challenge (IBC)” was one
of the top 5 searches nationwide. The amount of money raised,
over $115 million, is nearly as important as the amount of
awareness that ALS received. Not since Lou Gehrig made his
famous “luckiest man” speech 75-years ago, has there been as
much talk and as many people hearing of Amyotrophic Lateral
Sclerosis. This fantastic largess will be transformational and
will be used to bring help and hope to families living with ALS
in ways that were never before possible.
SUMMER 2013
Dad and Me
30 years ago
Mom and Me
together
The majority of Ice Bucket money is going to ALS
research critical to finding new ALS treatments.
And a large amount is supporting annual grants to
comprehensive ALS Centers. When my dad, Alan,
was diagnosed, we had to travel to New York City
for care. Today, there are ALS Treatment Centers
in Philadelphia, Hershey, Danville, PA and
the Lehigh Valley and many others throughout
the country.
My mom has been instrumental in getting out the
word about ALS, but, the Ice Bucket Challenge
brought this disease recognition beyond anyone’s
wildest dreams. Keep the ice coming. No matter
how much money is raised through the Ice
Bucket Challenge, it cannot be enough until ALS
becomes a disease of the past. Because while the
Ice Bucket certainly helped the ALS cause, we
are by no means there yet.
If you want me to dump more ice on my head, I’ll
do it. Keep the ice flowing. We need it.
Thank you, as always, for your support of my
mom’s work,
Already $21.1 million has been allocated for four specific
research projects that would not have even begun without the
IBC (see next page). AND – The ALS Association was able to
leverage this allocation into an additional $12.5 million in
donations from other donors. As exciting as this is, I am also
encouraged with an announcement made in December about
collaboration between our Association, the Muscular Dystrophy
Association (MDA), and Major League Baseball to fund a
research project aimed at finding a potential therapy for ALS.
This project is taking place right here in Philadelphia at The
University of Pennsylvania. This is the kind of collaboration
The ALS Association fosters and has become known for to
achieve its mission. If each individual, company, and institution
engaged in all elements of research, discovery, trials and
therapies were brought together, imagine the power and
possibilities.
With all the blessings the IBC brings to the fight against ALS, it
also brings its own challenge. How do we keep the momentum
going? It is vital that we continue to inform and educate as
well as cultivate these new donors to become faithful, long
term members of our ALS community. The Chapter as well as
the national ALS Association will do our part, but we cannot
do it alone. You can help. Take any opportunity to talk about
ALS and The ALS Association. ‘Friend’ The ALS Association
Greater Philadelphia Chapter on Facebook and share posts,
(on Twitter, Pinterest, or any other social media platform as
well). Participate in one of the seven Walk to Defeat ALS®
events in our region. Attend any of our Chapter fundraising
events or Community Partner events held by families to benefit
the Chapter. Sign up for our monthly giving program. Make a
planned gift from your 401-K, insurance policy, through your
will, or by utilizing any of a number of other options. Create and
host your own fundraising event. The possibilities are limitless.
I offer you my heartfelt thanks for everything you do
to enable us to bring help and hope to those families
living with ALS, and to pursue our vision of A WORLD
WITHOUT ALS. I promise we will be good stewards of
your support.
May you be blessed seven times seventy times for your caring,
consideration, and concern.
OUR NEXT BIG THING
TABLE of CONTENTS
www.alsphiladelphia.org/abrams
The ALS Association is the most diverse, dynamic and successful organization
helping families living with ALS. But, “help” is a big word when it comes to
caring for a loved one with ALS. Thanks to one man’s vision, our Chapter offers
the most unique program of its kind– the Howard I. Abrams In-Home Care
Program. Last year 91 patients received 12-14 hours of care a week in their
own homes, surrounded by their families. Total cost? $369,944.
Aides bathe, feed, toilet, dress and attend to many other needs. For some
patients, their presence makes it possible for a family member to work, for a
PS - Please write your check or give online today
at www.alsphiladelphia.org/2014ellynfund
From the Executive Director......... page 3
Research Update........................ page 4
Annual Luncheon........................ page 5
ALS Advocates........................ page 6-7
Patient Profile continued.........pages 8-9
Past WALKS.......................pages 10-11
Past Events........................pages 12-13
Volunteers & Resource.............. page 14
In Memoriam........................... page 15
SAVE THE DATE
Upcoming Events................... page 16
continued on page 7
1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org
3
research update
ANNUAL LUNCHEON HONORS 30-YEAR PARTNERSHIP
WITH THE PHILADELPHIA PHILLIES
THE ALS ASSOCIATION ANNOUNCES INITIAL COMMITMENT OF
$21.7 MILLION FROM ICE BUCKET CHALLENGE DONATIONS
TO EXPEDITE SEARCH FOR TREATMENTS AND A CURE FOR ALS
ADDITIONAL $12.5 MILLION
IN MATCHING GIFTS
SECURED BRINGS TOTAL
COMMITMENT TO $34.2
MILLION
Washington, D.C. (October 2, 2014)—
After the generous outpouring of support
from people all around the globe due
to this summer’s Ice Bucket Challenge,
the Board of Trustees of The ALS
Association has approved an initial
expenditure of $21.7 million in funding
to support six programs and initiatives to
expedite the search for treatments and
a cure for amyotrophic lateral sclerosis
(ALS). Additionally, $12.5 million in
matching donations brings the total
commitment to $34.2 million.
Four of these projects involve global
research cooperative alliances that
would not have moved forward without
this significant funding from The
Association, made possible through the
generosity of donors worldwide, along
with matching gifts.
“We recognize the sense of urgency
felt by people living with the disease
and their families and I want to
assure everyone that our number one
commitment is to making decisions
that get treatments to patients in the
fastest way possible,” said Barbara
Newhouse, President and CEO of
The ALS Association. “Our roadmap
to treatments involves collaboration
with other ALS organizations and
with industry, university investigators,
government agencies, pharmaceutical
and biotech companies and other
nonprofit organizations committed to
the fight against ALS.”
4
During a 30-day period this summer,
The ALS Association received more than
$100 million in donations. Over the last
few weeks, The Association has actively
convened key stakeholder groups,
including a panel of advisors made up of
people living with ALS, to provide input
into a comprehensive plan after approval
from the Board of Trustees.
The bulk of The ALS Association’s initial
$21.7 million commitment—$18.5
million—will advance four new
cooperative alliances for the next one to
three years involving research that has
been identified as critical to finding new
treatments for ALS: ALS Accelerated
Therapeutics (ALS ACT), The New York
Genome Center, the Neuro Collaborative,
and Project MinE. These projects would
not have been possible without Ice
Bucket Challenge donations.
There will be synergies between these
four initiatives that will increase the
quantity, and most importantly, the
value of data openly available to the
ALS research community worldwide.
The ALS Association will play a pivotal
role in coordinating these efforts.
Under the leadership of The ALS
Association’s Chief Scientist, Lucie
Bruijn, Ph.D., M.B.A., The Association
has been involved in the planning of
each of these new collaborations, and,
in each case, has sought the advice
and evaluation of leading researchers
to assess scientific merit, to gather
additional ideas for each project, and
to ensure the maximum relevance to
future therapies.
Photos clockwise: (top left) (l-r) Curt and Shonda Schilling had the chance to speak with
US Navy Lt. Commander Matt Bellina, who is living with ALS • Citizens Bank President
Daniel K. Fitzpatrick and Chris Cashman (presenting for Dan Hilferty who was unable to
attend) each spoke about their company’s commitment to the ALS cause • Phillies Third
Baseman, Cody Asche (rear) met Roger Kirk (seated) at this year’s Phillies Phestival and
was so inspired that he flew in from Nebraska to meet them again at the luncheon.
WATCH VIDEOS OF LEADING
ALS RESEARCHERS at
www.alsphiladelphia.org/research
See more at: http://www.alsa.org/
news/media/press-releases/ibc-initialcommitment.html
ALS ASSOCIATION JOINS FORCES
WITH MLB AND MDA TO FUND
RESEARCH PROJECT
The ALS Association has partnered with
the Muscular Dystrophy Association
(MDA) to fund a research project
aimed at finding a potential therapy for
ALS. An award totaling $240,000 has
been presented to molecular biologist
James Shorter, Ph.D., of Perelman
School of Medicine at the University
of Pennsylvania. The award has
been made possible in part by Major
League Baseball’s commitment to ALS
research and this summer’s viral ALS
Ice Bucket Challenge. Read more at:
http://www.alsa.org/news/archive/
als-association-and-mda-advance.html
On Friday, November 14th, the Greater Philadelphia
Chapter and the Philadelphia Phillies came together to
commemorate a phenomenal 30 year relationship to Strike
Out ALS at our Annual Luncheon at Loews Philadelphia
Hotel. Members of the Phillies family from the past three
decades attended and spoke, including David Montgomery,
Bill Giles, Curt Schilling, Geoff Geary and Cody Asche.
Special Phillies guests such as Regina Castellani, Peg and
Mickey Morandini, and Vince Nauss made this truly a trip
down memory lane for many.
The Luncheon Chairs were Daniel Fitzpatrick of Citizens
Bank and Daniel Hilferty of Independence Blue Cross.
Both companies were also presenting sponsors. Triple
Crown Sponsors included the Farber Family Foundation,
The Ron Krancer Family and PARX Casino. MVP Sponsors
were Abrams And Ingersoll, LLP, ARAMARK, Cozen
O’Connor, Chris Kanter, Geoff and Nora Kanter and
Jim and Marianne Koller.
The luncheon presented highlights from the thirty years
through videos created by Dan Stephenson the team’s
Manager, Video Production. 1984-1993 was emceed by
Scott Palmer, Phillies Director of Public Affairs. Phillies
Broadcaster Tom McCarthy introduced 1994-2003 and
Michael Barkann of Comcast SportsNet brought us from
2004 – Present, which of course include the 2008 World
Series Championship. Chapter Board Member Lauren
Stevenson Yacina, who lost her mother to ALS, creatively
assembled a most memorable keepsake book for the team,
as well as spoke about her ALS experience. Karen Delaney
Shideleff, also an ALS Board Member and patient, spoke
poignantly about her disease and her 25 family members
who have had ALS.
The event raised $280,000 for the work of the Chapter. On
behalf of all of our ALS families, thank you to the Phillies
for your tremendous support, raising over $15.2 million for
ALS patient care and research since 1984.
You can tack on another $30,000! The Phillies organization announced their 30-year total raised for ALS by way of a banner
across the stage – the $15.2 million does not include their additional $30,000 gift.
5
ADVOCACY
ALS ADVOCATES
MAKE A
DIFFERENCE
ALL YEAR LONG
Nationally, our advocates have helped secure over
$650 million for ALS research since 1998, changed
rules regarding Social Security and Medicare
benefits, and established the ALS Registry. Advocates
have passed a line item for ALS patient care in
Pennsylvania, recognized Lou Gehrig in Delaware, and
passed legislation to allow taxpayers in New Jersey
to donate to The ALS Association through their tax
returns. Join us for Pennsylvania Advocacy Day this
year on Tuesday, April 21 in Harrisburg and then for
National ALS Advocacy Day May 10-12 to meet with
members of Congress.
To learn more, email
[email protected]
Wes Rose
and Suzanne
Shorten share
their stories in
Washington,
DC and in
Pennsylvania
LeSean McCoy CONTINUES
TO FIGHT ALS BY THE YARD
or call 215-664-4139
OUR NEXT BIG THING
continued from page 3
Lynn and Joe Sontowski work
year-round to make this event
such a success.
The whole Mackler Clan
pitches in every year
MACKLER 5K TOPS ALL RECORDS
On Sunday, October 26, we celebrated the 15th anniversary
of the wonderful Mackler 5K, which Scott Mackler started
when he was newly diagnosed with ALS. All funds raised
support The ALS Association Greater Philadelphia Chapter’s
Scott A. Mackler, MD, PhD Assistive Technology Program.
This year, a record $105,867 was raised by runners and
walkers from Scott’s family, friends, synagogue, his summer
camp and Pi Kappa Alpha: Beta Pi Fraternity at the University
of Pennsylvania. Special thanks to organizers Joe Sontowski,
Harvey Mackler, Noah Snyder-Mackler and Alexander SnyderMackler. In a hotly contested sprint to the top, the top
fundraising team was Camp Harlam and the top individual
6
child to play after school, or a friend to drive the kids
to school. The need for this program’s expansion is
essential.
Please consider the value home care provides to
beneficiaries and give to
LeSean McCoy enjoyed a moment with his new friends
Charlotte and Steve Potter
www.alsphiladelphia.org/abrams
In 2014, LeSean McCoy became the all time top running
back of all time for the Philadelphia Eagles. Yet as great as
his actions are on the field, we are fans for what he does off
the field to support people with ALS. LeSean started a fan
based program called Fight ALS by the Yard in memory of his
grandmother, who passed away from Lou Gehrig’s Disease,
and he is calling on all of his fans to join his team.
Howard Abrams’ son Jeff and his daughter–in-law
Margaret Barry will MATCH your gift up to $25,000.
fundraising award went to Alexander Snyder-Mackler. The
cumulative amount raised since 1999 is now well over
$2,000,000.
Sadly the manifestations of Lou Gehrig’s disease ended
Scott’s brilliant research career on November 13th, 2013.
Even though Scott’s compassionate spirit and humanitarian
efforts will be sorely missed, his philanthropic contributions
to all Persons with ALS will continue to live on in his
absence through his Assistive Technology Program. Over the
years, there has never been an ALS patient in the Greater
Philadelphia region who has gone without communicative
technology because they could not afford it.
In addition to raising awareness and funds for ALS care,
LeSean is always ready to give a hug and a smile to people
with ALS, like Craig Colby of Wilmington, Delaware, who
met the running back after a practice session this summer.
LeSean was inspired by Craig’s story, which you can read in
this newsletter.
Families like the Hildebrands are grateful for the
Howard I. Abrams In-Home Care Program
Learn more and sign up to be LeSean’s teammate at
www.alsphiladelphia.org/fightalsbytheyard
7
patient profile CRAIG COLBY
continued from cover
Phillies with Craig and his wife Kristen
to Craig going online and
finding Kristen.
Back on the other side of
the country, Kristen was
also busy with her own life
changes. She was living in
Delaware and working as a
flight attendant, a job that
had become more exhausting
and stressful after the terrorist
attacks of 9/11. Getting back
in touch with Craig was a
spark that lifted her up just
when she needed it most. “I
had gone through a bad break
up, 9/11 changed everything
at work, and my grandmother
had just passed away,” said
Kristen. “Craig saved me. He
made my life whole.”
The relationship began with
the two talking online and on
the phone, sometimes for up
to six hours in a day. Kristen’s
flight attendant schedule
was always changing, so the
time difference was actually
a benefit. After a few months,
Craig decided to move to
Delaware in February of
2003. He soon began working
8
at the Texas Roadhouse
restaurant and quickly moved
up to management.
Kristen and Craig married in
2004. Life found a way to
work out. Charlie Brown finally
got the fairy tale ending with
the Little Red Haired Girl.
Of course, it wasn’t an
ending. Life went on happily
as the two grew together, got
a dog together, and travelled
the world together. Then came
a new challenge Craig and
Kristen would have to face,
ALS. But, like everything else,
they knew they would face it
together.
Craig’s ALS story began on
his birthday in 2007. He had
purchased a gym membership
and, on his first day at the
gym, a trainer helped him
learn about the equipment.
When the trainer told Craig
to lift a weight over his head,
he could not do it. It was a
baffling sensation for a young
man who had just finished a
golf tournament and was in
Craig Colby and friends
otherwise good health.
What follows next is a series
of events that many ALS
families will find familiar.
There were months of tests,
doctor visits and specialists,
various diagnoses, and drug
treatments, followed by
uncertainty from top medical
professionals. After all of
the tests and confusion, it
was Kristen who was the
first to make a guess at her
husband’s problems. “I had
just read Tuesdays with
Morrie,” said Kristen. “And
I thought, what if it’s ALS?
When we met with Dr. Leo
McCluskey at Pennsylvania
Hospital in 2008, I just knew
what we would hear.”
“Dr. McCluskey said, “Ok,
what do you want to do?” We
decided right away that we
weren’t going to let ALS take
us down. We just had too
many plans.”
Right away those plans
included fighting ALS –
together. At that first clinic
Friends of Craigs do the Ice Bucket Challenge
visit, they learned about the
upcoming Walk to Defeat
ALS® and within weeks they
raised $9,000 for Colby’s
Crew. That quick success
energized them both. It was
Craig and Kristen against the
world.
Thankfully, Craig and Kristen
soon realized that they would
not be in this fight alone.
Following the Walk to Defeat
ALS®, they attended the
annual Hot Chocolate event
where they met Wes Rose and
Gary Temoyan who shared
their ALS stories. Friends
rallied to their side and The
Texas Roadhouse restaurant
also provided support for
Craig to work as long as he
physically could, which ended
in August 2009.
Those friends also were by
the Colbys’ side when their
house suddenly burned down
on St. Patrick’s Day 2009.
Craig knew just how to ease
the tension when he turned
to Kristen and over a dozen
of their friends said, “Who
brought the marshmallows?”
“After that, I knew it would all
be OK,” said Kristen.
Since then, Kristen and
Craig have defied the odds to
make sure every day is better
than OK. Once an excellent
golfer, Craig is now in a
power wheelchair and needs
mechanical assistance to
speak and breathe. Yes, just
as they wouldn’t let a house
fire burn the life they created
together, the Colbys won’t let
ALS beat them.
In 2014, Craig and Kristen
found new hope in the ALS
Ice Bucket Challenge. They
did the challenge multiple
times, using the social media
phenomenon to sell over 120
shirts for their Walk to Defeat
ALS® team. The Challenge
also gave them an opportunity
to educate others about the
disease, make new friends,
comfort others, and direct
people to services at The
Greater Philadelphia Chapter.
This year was made even more
special when Craig surprised
Kristen and they arranged to
renew their wedding vows at
Citizens Bank Park before the
Greater Philadelphia Walk to
Defeat ALS® on November 15.
Every day this Charlie Brown
and Little Red Haired
Girl find new reasons to take on
the world together.
“Craig may have ALS, but he’s
smarter than ever, funnier than
ever, and is still remarkable to
me,” beamed that red haired
girl, Kristen.
9
PAST WALKS to Defeat ALS®
Greater Philadelphia Walk to Defeat ALS® Presented by ACME Supermarkets and
Pharmacies, BAYADA Home Health Care & Pride Mobility Products/Quantum Rehab Corp.
Rehoboth Beach Walk to Defeat ALS®
9/13/2014
Walk Fast Facts
Total Raised - $81,288
# of Walkers - 750
# of Teams - 35
TOP INDIVIDUALS:
1st Place: Kayla Wilson
2nd Place: Cindy Fluharty
3rd Place: Fay Shockley
OTHER TOP FUNDRAISERS
INCLUDED:
Top Rookie Team:
Fabulous Ellen
TOP TEAMS ON WALK DAY:
1st Place: DeFeeting ALS
for Pam
2nd Place: Gene’s Machine
3rd Place: Team Shockley
Walk Fast Facts
# of Walkers - 1650
# of Teams - 100
1st Place: Donna’s Dugout
2nd Place: Steps 4 Sarah
3rd Place: Team Benjamin
INCLUDED:
Top Rookie Team:
Team Benjamin
Top Youth Fundraiser:
Laura Shultz
Top School Team:
Lehigh Fights ALS
TOP CORPORATE TEAMS:
1st Place: Samuel Adams
PA Brewery
TOP INDIVIDUALS:
1st Place: Judy Parsons
2nd Place: Donna and
Paul Katcher
3rd Place: Gregory Bauer
Top: Dan Lindenberger and
Corporate Recruitment Chair
Phil Clemens cut the ribbon
Left: The ALS Avengers were
just some of the superheroes
at the Lehigh Valley Walk to
Defeat ALS®
10
11/15/2014
Walk Fast Facts
# of Walkers - 7,000
# of Teams - 278
Bottom: Top Rookie
Team Fabulous Ellen
1st Place: Kirkin’ It
2nd Place: Marching for Mike
3rd Place: Absolutely Living
Strong
Connor Wilson
Lehigh Valley Walk to Defeat ALS®
10/18/2014
Top: Bill O’Brien and
Executive Director
Jim Pinciotti with top
fundraiser
Kayla Wilson
Ocean City Board...Walk to Defeat ALS®
9/20/2014
Walk Fast Facts
# of Walkers - 2000
# of Teams - 97
TOP INDIVIDUALS:
1st Place: Mary Beth
Quinlan
2nd Place: Gail Costello
3rd Place: Doug Letterman
TOP INDIVIDUALS:
1st Place: Jack Hess
2nd Place: Ryan &
Kaitlin Kirk
3rd Place: Michael
Honrychs
INCLUDED:
Top Rookie Team:
We “Jet” for Doc H
Kailea Heston
TOP CORPORATE TEAMS:
1st Place: Team BAYADA
2nd Place: Team Tierney
3rd Place: Team ACME
Members of Team Perry gather to Walk to Defeat ALS® at Hershey
Medical Center
Team Souf brought
together a huge group of
family and friends
1st Place: Jo’s Rowdy
Goudies
2nd Place: Joe U’s Crew
3rd Place: Rallying for Ron
INCLUDED:
Eden Gehring
National Sponsors: BAYADA Home Health Care, Pride Mobility Products Corp., Quantum
Rehab, Numotion, Permobil, Phi Delta Theta Fraternity Men’s Senior Baseball League
Top fundraiser Mary Beth
Quinlan had a great time on
the boardwalk.
Top Corporate Team:
Atlantic City Electric
Presenting Sponsors: Certainteed, ShopRite and Their Customers, BAYADA Home Health
Care, Pride Mobility, Quantum Rehab, ACME Supermarkets & Pharmacies
Top Rookie Team:
Team JShip
WE THANK OUR WALK TO DEFEAT ALS® SPONSORS
2NB Bank
Air Products
Al and Kelly Slipakoff
Bennett Automotive Group
Brinker Capital
Colligas Family Supermarkets
Cravath, Sukine & Moore, LLP
D & H Marketing Group
Dirt Works, Inc.
Fox Subacute
Friends of Dustin Myers
Hovus, Inc.
Lehigh Valley Health Network
Lehigh Valley IronPigs
Majestic Athletic
Mangar Medical Packaging
McMahon Agency, Inc.
MobilityWorks
NASSM
Samuel Adams
The Martin Family
Tierney
Universal Supply
Young, Conaway,
Stargatt & Taylor LLP
11
PAST EVENTS
Community Partner Event
REPORT By Ashley Hendrix
ALS Express THE ALS EXPRESS WEBSITE IS LIVE!
Register now for May 30, 2015 www.als-express.org
This year, our Community Partner Events have been
better than ever, raising over $225,000. The Ice
Bucket Challenge has not only brought awareness to
our chapter, but it has also brought a lot of support
and involvement from different communities.
The Ice Bucket Challenge added a variety of new and
creative events to our Community Partner Calendar,
such as a donut dash, a backyard homerun derby,
golf outings, food trucks, and bake sales have all
contributed to raising funds for our chapter.
We love the creativity and energy of all of our
Community Partner Events, from those that just
began to the events that have made a difference over
many years. It’s wonderful to see year after year how
these events have grown and how much they have
cumulatively raised for research and our Patient Care
Services. Every dollar is a step in the right direction
to ending this awful disease and these events are a
great way to make that happen.
Barry’s Bikers have been
a fixture at ALS Express
for nearly a decade.
Roger Kirk
ALS ASSOCIATION GOLF OUTING
HOSTED BY GREG GROSS
Shortly after the date was set and word got out we knew, “we were going to need
a bigger boat!” The Roger Kirk ALS Association Golf Outing Hosted by Greg Gross
blew the doors off welcoming 275 golfers, forcing us to find another course! Old
York Road Country Club and Limekiln Golf Course teamed up and made for a
terrific day of golf, friendship and laughs. The day started at 6:30 AM and did not
conclude until after 7pm. The event raised over $125,000 for the Association!
It was a memorable day for everyone involved. Special thank you to the Golf
Committee, the Kirk Family, our generous sponsors and Greg Gross for putting
your heart and soul into this special event! Want to secure your spot for next
year? Save the Date September 28, 2015…
Top: Roger Kirk with Greg Gross
Bottom: The Kirk family was on hand to thank golfers and help coordinate the event.
“Thanks to all of the incredible sponsors who stepped up for the golf outing.”
12
If you’re interested in holding an event or fundraiser,
contact me at [email protected] and see
how I can help you kick off your ALS event.
SOME EVENTS THAT STAND OUT THIS YEAR INCLUDE:
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1st Annual Ken Dawson Memorial Golf Outing
1st Annual Lancaster Bike In
2014 HR Derby to Defeat ALS
23rd Annual Billy Lake Memorial Basketball Marathon
2nd Annual Lou’s Grand Slam 5K Run/walk
3rd Annual Ray Matthews Memorial ALS Bike Tour
ALS Awareness Night at the Flyers
ALS Benefit Polka Dance
ALS Charity Crop
ALS Fundraiser - Braveheart Highland Pub
Annual Pig Roast to Benefit ALS
AristaCare at Meadow Springs Fundraiser
Bartone Golf Outing/Dinner Dance
BAYADA Food Truck Fundraiser
Boscov’s Friends Helping Friends
Burlington Charity Day
Car wash & bake sale to help Pat fight ALS
Christmas Shoppe to Defeat ALS
Community Days 2014 at the Bon-Ton
Corazon - Photo Marquelia
CPK FUNdraiser
Dan Schantz Greenhouse Fundraiser
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Denim Day
Donna’s Dugout Pitch to the Katcher Softball Event
Donut Dash Brielle
Duffers Tavern fundraiser
Fall Fling Festival - Punkin Chunkin
Ferguson Enterprises Annual Trade Show
Houlihan’s ALS Fundraiser
Legs 4 Greg Walk for Greg Telthorster
LoL Dunks ALS
Louie’s Dine Out week
Mackler 5K
Macungie Vendor bingo
Odell Studner Golf Outing
Pals of Jimmy Duffy Annual Outing
Rockhill Gives Back! Community Ice Bucket Challenge
Ryan’s Pub Golf Outing
Shippensburg Univer. Men’s Soccer team ALS night
Shop for a Cause
Splash Zone Waterpark Ice bucket challenge
Sweet Taco/Walk to Defeat ALS fundraiser
Towers Club Golf Outing/Supporting ALS
UHS ALS Fundraiser
13
in memoriam
The
Mitsdarfer
family had
a great time
at the 2014
Holiday Party
THANK YOU VOLUNTEERS!
PATIENT AND FAMILY HOLIDAY PARTY
Mike Farris, our November 2014 Volunteer of the
Month, helps out at many Walk to Defeat ALS®
events and is a regular Community Ambassador.
To find out how you can be a volunteer to help at
events, in our office, or to spread awareness to
the general public, call us at 215-643-5434 or
email [email protected]
The 2014 ALS Patient and Family Holiday Party at
the Radisson at Valley Forge was one of the most fun
events of the year for families from across our region.
From amazing dancing, great food, presents for kids, a
visit from our friend the Phillie Phanatic and, of course,
terrific music from Hot Hot Hot Entertainment, everybody
left the day with a lot of smiles. Thank you to all who
made the party one to remember!
resource groups
This 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 quarterly and lists upcoming dates, times, and other
important information. Also, be sure to RSVP to the facilitator, if specifically requested.
Ambler Support Group
ALS Chapter Office,
Springhouse Corporate Center
Ambler, PA
Info: Anne Cooney, MSW, LSW
215-664-4177
[email protected]
Bereavement - Ambler, PA
A five-session series is available for
people who have lost someone to ALS
in the past 2 years.
Info. & RSVP: Jennifer Klapper
215-726-8724
Caregivers & Family Members - Ambler, PA
Bi-monthly Info. & RSVP: Karen Dawson-Haines
215-487-4519
Caregivers & Family Members
- Red Bank, NJ
Info. & RSVP: Patricia Schaeffer, RN
732-239-4724 or
Kathy Valentino, LCSW
609-433-6333
14
Cherry Hill Support Group Cherry Hill, NJ
Info & RSVP:
Jennifer Klapper, RN, MSN, CNS-BC
215-726-8724
Delaware - Wilmington, DE
Info.: Wendy Strowhouer, RN
302-547-8482
Delaware Resource Group
Silverside Church
Wilmington, DE
Info: Wendy Strowhouer, RN
302-547-8482
Harrisburg - Hershey, PA
Info. & RSVP: Judy Lyter, LPC, RN
717-566-1700
Lehigh Valley - Allentown, PA
Info.: Wendy Barnes, MSW, LSW
610-797-2102
Lancaster, PA
Info. & RSVP: Joan Groh
717-278-8866
[email protected]
Monmouth/ Ocean CountyRed Bank, NJ
Info.: Patricia Schaeffer, RN
732-239-4724 or
Kathy Valentino, LCSW
609-433-6333
Northeast PA Resource Group Bloomsburg, PA
Wilkes-Barre, PA
Info.: Jennifer LaRegina, RN
570-436-4529
Wilkes Barre, PA Support Group
Info: Jennifer LaRegina, RN
570-436-4529
Please go to www.alsphiladelphia.org - Patient and Family Services for additional information about all Resource Groups.
Earl Artle
Bernadette Balf
William Barton
Paula Barvin
Richer Batista
Ruby Becker
Joshua Beitz
Raymond Berry
Victor Bini
Michael Bloom
Gwendolyn Borgese
Irene Borick
Barbara Brand
Constance Brocavich
Carrie Burk
Frank Camuso
Shirley Cardona
Lura Catlin
Anne Celotto
Phyllis Chedester
Joseph Dempster
Joyce Derstine
Charles Dietzler
Joseph Donovan
Doris Durner
Todd Emig
Sidney Faulkner
Spero Ferentinos
Edith Ford
Thomas Fulmer
Sharon Gallo
Kathryn Giardina
Martha Gibbs
Lesley Gladney
Jean Graham
JoAnn Hall
Gerhard Hammer
Helenann Hatfield
Charles Heitzman
Patricia Hooks
Ella Mae Hoover
David Huey
David Ihde
Michael Kessler
Jeannette Kilcourse
John Kinyon
William Klopp
Lelarathne Konara
James Krieger
Miguel Lacasa
Mildred Lefever
Valerie Levinson-Kramer
Ruth Mankin
Dolores Martin
Van Masciantonio
Helen Mayer
Rose Mary McCarthy
John McNally
David Meyers
Sharon Miller
Barbara Morgan
Mary Narehood
David Neaves
Pauline Neeser
John Nichols
Martin Nickel
Betty Noble
Cynthia Nolan
Jo Anne Outten
John Pace
Daniel Pellegrino
Thomas Picarelli
Mary Pikul
Charles Polk
Kenneth Prager
Usha Ramnit
Laura Randar
Stewart Resnick
Musser Robert
Robert Roddy
Christine Roski
Peg Sabol
James Sagnelli
Roy Schaefer
Jeff Seidel
Harold Smith
Paul Snyder
Kenneth Sparks
Samuel Torsky
John Vendetti
Mary Wallace
Clark Whiteleather
Brian Whitney
Edward Williams
Wanda Wilson
Barbara Wiseman
Benjamin Woodland
Mary Jane Woods
professional staff
EXECUTIVE DIRECTOR
James V. Pinciotti
DIRECTOR OF
PATIENT SERVICES
Brenda Edelman, LCSW, BCD
AND PUBLIC POLICY
Tony Heyl
MENTAL HEALTH NURSE
Jennifer Klapper, RN, MSN,
CNS-BC
SOCIAL WORKERS
Wendy Barnes, MSW, LSW
Anne Cooney, MSW, LSW
Melissa Coll, MSW
Maryann Jones, LSW, MSW
Mary Beth Tomczak, BSW
CONTROLLER
Andrew G. Lash, CPA
CLINICAL MANAGER, ASSISTIVE
TECHNOLOGY SERVICES
Alisa Brownlee, ATP
CHIEF DEVELOPMENT OFFICER
Jeff Cline
NURSE COUNSELOR
Judy Lyter, RN, MS, LPC
EVENTS MANAGER
Julie Morrison McKeever
ANNUAL GIVING MANAGER
Donna Cleary
STAFF NURSE
Maureen Reid, RN, BSN
EVENTS SPECIALIST
Ashley Hendrix
DEVELOPMENT COORDINATOR
Joan Borowsky
REGIONAL NURSE
COORDINATORS
Gail Houseman, RN, APRN, MSN
Jennifer LaRegina, RN
Sue Walsh, RN, MSN, CS
IT MANAGER
Heather Pecharo
DIRECTOR OF
COMMUNICATIONS
EVENTS DIRECTOR
Allison Walker
DATABASE ADMINISTRATOR
Amanda Laputka
DATABASE COORDINATOR
Mary Noel
ADMINISTRATIVE STAFF
Evelyn Thoman
Patient Services Assistant
Maryann Vagnoni
Executive Assistant
TRANSPORTATION
VAN DRIVERS
John Conner
Thomas R. Mitchell
OFFICE
MANAGER
Erin Farrell
15
The ALS Association (Lou Gehrig’s Disease)
Greater Philadelphia Chapter
321 Norristown Road, Suite 260
Ambler, PA 19002-2755
phone 215-643-5434
toll-free 1-877-GEHRIG-1
www.alsphiladelphia.org
NON-PROFIT ORG.
U.S. POSTAGE
PAID
PERMIT NO. 215
WEST CHESTER, PA 19382
Our mission is to lead the
fight to treat and cure ALS
through global research and
nationwide advocacy while
also empowering people
with Lou Gehrig’s Disease
and their families to live
fuller lives by providing
them with compassionate
care and support.
UPCOMING EVENTS
4 ON 4 FOR A CURE
3/3 – 3/7
PLYMOUTH MEETING, PA
LAKEWOOD WALK TO DEFEAT ALS®
5/2
LAKEWOOD, NJ
DONN’S DASH 5K AND FUN RUN
6/6
WILKES-BARRE, PA
HOT CHOCOLATE
3/12
ADVENTURE AQUARIUM
CAMDEN, NJ
18TH ANNUAL JEFF ARMSTRONG
MEMORIAL GOLF OUTING
6/17
WEST CHESTER, PA
WILKES-BARRE PENGUINS ALS NIGHT
3/15
SCRANTON, PA
BILLY LAKE BEEF AND BEER
3/27
NEWTOWN SQUARE, PA
NIGHT OF HOPE 2
3/28
MILFORD, DE
CHILLY CHILI FOR PAULA
3/28
WEST CHESTER, PA
ONE PARTICULAR PHLOCKING
4/17-4/19
MOUNT LAUREL, NJ
HERSHEY WALK TO DEFEAT ALS®
6/6
HERSHEY, PA
BLOOMSBURG, JORGE’S WALK TO
DEFEAT ALS®
5/16
BLOOMSBURG, PA
ALS EXPRESS
5/30
WILDWOOD, NJ
PHILLIES PHESTIVAL
6/1
PHILADELPHIA, PA
ALS AWARENESS NIGHT WITH LEHIGH
VALLEY IRONPIGS
7/31
ALLENTOWN, PA
REHOBOTH BEACH WALK TO DEFEAT
ALS®
9/12
REHOBOTH BEACH, PA
OCEAN CITY BOARD…WALK TO DEFEAT
ALS®
9/19
OCEAN CITY, NJ
ALS ASSOCIATION GOLF OUTING
9/28
AMBLER, PA
LEHIGH VALLEY WALK TO DEFEAT ALS®
10/17
ALLENTOWN, PA
FOR MORE INFORMATION ON ALL OUR EVENTS, VISIT www.ALSPHILADELPHIA.org
Follow The ALS Association Greater Philadelphia Chapter on Facebook at www.Facebook.com/alsphiladelphia and on Twitter @alsphiladelphia

patient profile - The ALS Association Greater Philadelphia Chapter

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