MSConnection - National Multiple Sclerosis Society

MSConnection
Winter 2002
Wish You Were Here!
Central New England Chapter
Skiing is Believing
adaptive skiing opens the slopes to all
B
Lynn & Kevin Berry atop scenic Mt.
Evans in Colorado.
DISABILITY TRAVEL TIPS
by Kevin Berry
o, you got that itch. You need a
vacation and you’re ready to hop
on a jet plane, ride the rails, and
cruise the high seas. But, if you have
MS or some other disability, isn’t that
outrageously complicated–is it even
possible?
My advice: don’t let your disability
stop you from packing
your suitcase! There is
cont'd on pg. 4
orn in Belgium, Didier Putzeys
came to the United States to
attend college and has not
looked back. Remaining in the U.S.,
Didier entered the professional world
and started a family with his wife,
Suzanne. In his spare time, Didier
remained active by participating in
athletic activities.
S
I N S I D E
From the President ............................... 2
Chapter News........................................ 3
MS News & Resources ......................... 4
Research Advocate's Corner .............. 10
Advocacy ............................................. 12
FYI ....................................................... 14
Volunteers ............................................ 15
Fund Raising News .............................. 16
Coming Attractions ............................... 20
Didier Putzeys on the slopes in adaptive
skiing gear at Waterville Valley.
In 1987, Didier was diagnosed with
MS. Experiencing symptoms of blurry
vision, numbness of his left side,
spasticity and fatigue made staying
active a challenge. Didier had been a
dedicated skier but was unable to ski
shortly after the diagnosis–until he met
another disabled
woman four years ago
cont'd on pg. 5
The National MS Society ... One thing people with MS can count on.
FROM
THE
PRESIDENT
R
esilience is one of
those characteristic traits that is
shared by many
people who have MS
and by those who care
for them. Whatever
obstacle life throws at
them, from MS itself
Arlyn White
to inaccessible
buildings to inconsiderate people, they
take it in stride and keep on going.
Every time I meet a person with those
qualities, it just inspires me.
Physical limitations shouldn't restrict your vacation plans. MS certainly
steals plenty of things from a person,
getting a little enjoyment out of life
shouldn't be one of them. Understandably, even when your disabilities are
not severely restricting by themselves,
the unpredictability of multiple sclerosis
may make the thought of being away
from home enough to stop you from
leaving in the first place...if you let it.
In this issue of MSConnection, there
are stories of four people who have MS,
who–in spite of and because of MS–
have enjoyed a range of things, including a simple walk through the park,
skiing downhill, sightseeing in another
state, and climbing a mountain.
The Chapter also offers recreational
programs, including MS Vacation
Week, MS Camp, Family Discovery
Weekend, and MS Night at the Ballpark to name a few. For more examples of ways to leave your troubles
behind, but how to take your disabilities or physical limitations with you,
call the Chapter's Information &
Referral Desk, they'll be happy to
2
Winter 2002
share our resources.
on another note...
Passage of the 2003 Massachusetts
State budget was a major victory for
members of the Chapter's Action Alert
Network, who stayed the course for
three years in a noble effort to gain a
commitment from the State for MS
PASS, a care coordination program for
people in need who have MS, run by
the Dept. of Public Health. However,
the Acting Governor reversed her own
action when she again used emergency
executive powers to eliminate funding.
The victory stands, nonetheless.
The Action Alert Network proved its
effectiveness once again, and demonstrated to our legislators on Beacon Hill
that people who have multiple sclerosis
are a political force. And I thank you
for that, with all my heart.
MSConnection
A publication of the National Multiple Sclerosis Society,
Central New England Chapter.
Chairman: S. Woodwirth Chittick
Chapter President: Arlyn A. White
MSConnection Editor: Steven R. Sookikian
Information provided by the Central New England
Chapter of the National Multiple Sclerosis Society
is based on professional advice, published
experience, and expert opinion, and does not
constitute therapeutic recommendations or
prescription. The National MS Society strongly
recommends that you discuss all questions and
information with your physician. The Chapter
does not endorse products, services, or
manufacturers. Such names may appear solely
because they are considered valuable information.
We assume no liability for any product or service
mentioned.
The National MS Society is dedicated to ending the
devastating effects of multiple sclerosis.
©2002 National Multiple Sclerosis Society,
Central New England Chapter
101a First Ave., Suite 6, Waltham, MA 02451-1115
800-493-9255 www.msnewengland.org
1-800-493-9255
N E W S
Officers & Trustees Elected at Annual Meeting
W
ith the new fiscal year came the
52nd annual meeting and the
election of four new trustees, the
reelection of seven, and a new slate of
officers to guide the Chapter on a path
of continued growth.
Beth S. Greenblatt,
a communications professional with extensive
corporate experience,
now working as an
independent consultant.
Michael Iaccarino, Beth Greenblatt
President and CEO of
Epsilon, a leading marketing solutions provider
based in Burlington,
Mass., with a strong
nonprofit practice.
Robert J. Perez,
Vice President, US com- Michael Iaccarino
mercialization activities
for Biogen, Inc.’s CNS
Business Unit.
Deborah Brown,
MD, Vice President of
Neurology, North
America, for Serono NA,
adds strength in medical Robert Perez
and marketing expertise.
Reelected to threeyear terms were: S.
Woodworth Chittick,
Sue Ellen Epstein,
Joan Kaplan, Eli
Lipcon, George E.
Deborah Brown
Masaro, Marybeth
McIntyre, and Sidney
J. Rosenthal.
The 2002 Annual Meeting also saw
the passing of the gavel from outoging
Chair Bill Keough to the new Chair-
www.msnewengland.org
man, "Woody" Chittick.
Chittick, a retired
Vice President at Ocean
Spray Cranberries, Inc.,
was First Vice Chair and
on the Executive
Committee. He spoke
about his goals for the
new year, specifically on Woody Chittick
building awareness of
MS, and on his belief that there were
many more people who had MS than
the 12,500 in the Chapter's database.
Guest research speaker Dr. Hillel
Panitch, Professor of Neurology at the
Univ. of Vermont College of Medicine,
and Director of the MS Center in
Burlington, Vt., provided insight on the
differences and similarities between
Avonex and the newly approved Rebif.
He also shared information on the
current trial with Antegren, and other
promising combination therapies.
Another
highlight of
the evening
was the
Chapter
Progams
Acheivement
Award
presentation
Lynne & Kevin Berry
to Kevin
Berry, Cape Cod Self-Help Group
leader for more than five years. Kevin
was honored for his innovativeness and
dedication to group members and the
Chapter. He recently started a network
of volunteers within the group to help
with babysitting, rides to Doctor visits,
errands, and more for members whose
MS makes things too difficult.
MSConnection 3
P R O G R A M S
Wish You Were Here... cont'd from pg. 1
a whole world out there to visit. It takes
a little more planning, but it is worth it.
First, start with an idea of where
and when you want to go. Next, contact
a travel agent with disability travel
experience. Ask them how many
disability vacations and travel plans
they've booked. Most agents should be
able to handle your needs, but be sure
Kevin Berry on snowy Mt. Evans.
to ask if they can accommodate your
Rental Vehicles — Will you
specific travel requirements.
need hand controls? Do you need a
When you discuss your travel plans
van with a lift? Do you need a vehicle
with the agent, express all your needs
with a large trunk for your assistive
and concerns. Some areas to think
devices?
about, but not limited to, are:
Airport Mobility — What do
you do with your wheelchair or scooter?
You can check it at baggage and use
the airline's wheelchair to get around, or
you can use your own and check it at
the departing gate. This means that
airline personnel assist you to the
aircraft, they put your chair in baggage
and have it waiting at your next stop.
It takes a little more
planning, but it is worth it
Hotel Accommodations —
Depending on the extent of your
disability, this can raise several issues.
Is the hotel accessible? Are there
guest rooms on the first floor? Are the
rooms big enough to move around in?
Do you need an accessible bathroom
with a roll in shower, a low sink, and a
toilet with handrails? Do you need a
refrigerator for medications? Are the
doorways wide enough to get a
wheelchair through?
4
Winter 2002
Tour groups, cruises, train
excursions, etc., pose many of the above
problems. Also, keep in mind that their
itinerized schedules may not always be
flexible to meet your needs.
Write your questions down before
you go to the travel agency to ensure
you don’t forget anything. Remember to
discuss traveling with your medications. You generally need a copy of
your prescription and your doctor’s
name and phone number. Prior to
booking your trip, establish that your
needs will be met, and get the names of
the people you, or your agent, talk to—
especially the people who will assist
you at your destination. This will give
you peace of mind and will guarantee
that your requests and needs are met.
Remember to ask. If at any time
during your travel, you meet an
unexpected problem, ASK for help. If
you don’t get an answer from the
person you are talking to, ask for a
supervisor or manager. Airlines have
conflict resolution
cont'd on pg. 6
1-800-493-9255
P R O G R A M S
Skiing is Believing... cont'd from pg. 1
who introduced him to the Adaptive
Skiing program.
“I was participating in an ‘Understanding Our Differences’ event at an
elementary school with my wife, where
we were teaching the children about
people with disabilities,” explains
Didier. “Another participant showed a
video of herself skiing and I just
couldn’t believe it!”
After some research, Didier discovered that Waterville Valley offered a
similar skiing program. Known as the
Waterville Valley Adaptive Skiing
Program, it is a special part of
Waterville Valley where physically and
mentally challenged children and
adults team up with volunteers to ski
unencumbered by a wheelchair or
braces. He immediately signed up and
has been going back ever since.
“Being able to do a sport as a
disabled person was like rediscovering
a new life,” recalls Didier. “Now, I
could participate in this activity with
my entire family which has been
absolutely fabulous!”
Kathy Chandler, a PSIA-Certified
Adaptive Examiner and former Ski
School director founded the Adaptive
Skiing Program in 1992. Today, the
program is guided by over 80 dedicated
and highly trained volunteer
instructors who teach 7 days a week.
“I am so lucky to be able to
participate in a fun, active sport with
people that are wonderful,” confides
Didier. “It is truly like a big family.”
Group and private lessons are
available any day, including holiday
periods. Lesson prices range from $45
to $60, and include an all-mountain lift
www.msnewengland.org
It's downhill all the way for Didier!
ticket, the use of specially designed
adaptive ski equipment like a monoski, and one-on-one instruction. The
resort also offers cross-country skiing
on The Nordic Center’s 70km tracked
and groomed trail network.
“My first time back on the mountain
since my diagnosis, I was thrilled,”
exclaimed Didier. “I got the feel for it
very quickly and am now known to be
quite daring on the slopes.”
Traveling to Waterville Valley each
winter has become a tradition for
Didier and his family. About to begin
his fourth year of participation, Didier
is excited to start the season soon with
just one request.
“Let’s hope that this year there will
be more snow than last winter!”
ADAPTIVE SKIING
To schedule a lesson, volunteer
as an instructor, or to request
adaptive skiing info, please call
1-603-236-8311 x3175, or write:
Waterville Valley Adaptive
Skiing Program
PO Box 253, Town Square
Waterville Valley, NH 03215
MSConnection 5
P R O G R A M S
Wish You Were Here... cont'd from pg. 4
managers available at most airports.
If necessary, ask to speak to them.
There are a large and growing
number of Americans with disabilities.
Remember, you are part of a large
consumer market that the industry
can’t ignore. You’ll be surprised to
find out that most travel providers are
extremely accommodating. And, if you
have the unfortunate luck of finding
one who can’t—or won’t—accommodate you, then go to their competitors
(and let them know why you are going
elsewhere).
The bottom line is, in the U.S. the
“Americans with Disabilities Act”
protects you. Overseas travel is not
quite as accommodating, but with a
little more research, even foreign
obstacles can be overcome.
Get out. Travel. Take your
vacation, cruise and have a great time.
Your destination is only limited by
your imagination. Explore your world!
Kevin E. Berry is a disability travel
consultant and an MS support group
facilitator. He was diagnosed with
multiple sclerosis in 1988.
Looking for a Support Group?
Visit www.msnewengland.org,
or call 1-800-493-9255
If you have a relapsing form of MS
and are not currently using
AVONEX, BETASERON,
COPAXONE, or REBIF, the National
MS Society recommends that you
talk with your Doctor about the
right course of treatment for you.
6
Winter 2002
Accessible Travel &
Recreation Resources
Travel Agencies
Boston Harbor Cruises, Boston, MA,
617-227-4321
Business Travel International, Boston,
MA, 800-698-7778
Colpitts Travel Agency, Dedham, MA,
781-326-7800
Outdoor Explorations, Medford, MA, 781395-4999, 781-395-4183,
www.outdoorexplorations.org
Publications
Accessible Bus Information, American
Bus Assoc., Washington, DC, 800-2832877, www.buses.org, click on ABA
members
Air Travel Guide for Seniors and
Disabled Passengers, By Robert B.
Ronald, IADC, 2001
The Disability Bookshop Catalog, Twin
Peaks Press, 800-637-2256
The Disabled Driver’s Mobility Guide,
800-222-4357, www.aaa.com
How to Travel: A Guidebook for Persons
with a Disability, By Fred Rosen, Science
and Humanities Press, 1997
Walks in Welcoming Places: Outing in
the Northeast for Strollers of All Ages
and the Disabled, By Marina Harrison and
Lucy D. Rosenfeld, Michael Kesend Ltd.,
1995
Websites
www.everybody.co.uk
www.emerginghorizons.com
www.beyond-ability.com
www.access-able.com
www.disabilitytravel.com/
www.dot.gov/airconsumer/horizons.htm
www.rockies.net/~access/
www.travelintalk.net (membership fee)
1-800-493-9255
P R O G R A M S
Adaptive Skiing
Mt. Sunapee N.E. Handicapped Sports
Assoc., NH. 800-628-4484, www.nehsa.org
AbilityPLUS, Inc., Waterville Valley, NH,
978-464-2300, www.abilityplus.org
Adaptive Horseback Riding
Challenge Unlimited @ Ironstone Farm,
Andover, MA, 978-475-4056,
www.challengeunlimited.org
Greenlock Therapeutic Riding Center,
Rehoboth MA, 508-252-5814
Cape Cod Therapeutic Riding Center,
South Dennis MA, 508-394-1057
UNH Therapeutic Riding, Durham NH,
603-862-1174, 603-862-0131
Windrush Farm, Therapeutic Equitation,
Inc., Boxford, MA, 978-682-7855
Cruises
The Isles of Shoals Steamship Co.,
Portsmouth, NH, 800-441-4620,
www.IslesofShoals.com
M/S Mount Washington Cruises, Laconia,
NH, 888-843-6686, www.cruiseNH.com
Sports
Adaptive Sports & REC, Springfield, MA,
800-232-0510
Butlee’s Handicap Outdoor Adventures,
Brockton, MA, 508-588-8059,
www.handicapadventures.org
Commonwealth of Mass., Accessible
Outdoor Recreation Opportunities,
Amherst, MA, 413-545-5353
Northeast Passage, Chapter of Disabled
Sports, USA, Durham, NH, 603-862-0070,
www.nepassage.org
Outdoor Explorations, Medford, MA, 781395-4999, www.outdoorexp.org
Wheelchair Sports & Recreation, No.
Quincy, MA, 617-773-7251
Water Sports
Community Boating, Boston, MA, 617523-1038, www.community-boating.org
www.msnewengland.org
MS Vacation Week
Recreation and
relaxation were
enjoyed by 50
families at MS
Vacation Week
in Hebron, CT,
at the fully
accessible Camp
Hemlocks. In
addition to fun, activities included
aquatics,
Tai Chi,
crafts, a
research
update,
and—the
ever
popular—
Talent
Show!
Sail Away
Sailing just
might be the
last thing you
would think
of doing in a
wheelchair,
but that's
just what a
group of people who have MS did on
September 22 thanks to the Central
New England
Chapter's
Southeastern Mass.
office and Nick
Brian-Brown of
Duxbury
Maritime School,
who was 1993
World Disabled
Sailing Champion.
MSConnection 7
P R O G R A M S
On the Right Path
Published quarterly by the National MS
Society specifically for kids 5 to 10 years
old and for their relatives who have MS.
Games, fun, and information too! A great
interactive tool for adults and children.
CHILD:
ADDRESS:
ST:
ZIP:
CITY:
PHONE: (
)
GUARDIAN'S SIGNATURE:
GRADE:
CHILD’S AGE:
RELATIVE WITH MS:
Michael Henry of Harvard, Mass., found
a new life clearing the way for others.
D
iagnosed with MS in 1985, Michael
Henry had to put his landscaping
career behind him. Because he loved
MAIL TO: Amber Stalker
National Multiple Sclerosis Society
working with his hands–also being a
101a First Ave., Suite 6
cabinetmaker–it was hard to accept.
Waltham, MS 02451-1115
“I remember it like it was yesterday,” recalls Michael. “I was working at
Teenagers with MS, and a large job in Lexington when I started
Young Adults with MS
having symptoms like drooling. At first
I thought I had too many beers.”
who were Diagnosed as
Michael went to his family doctor,
Teenagers...
who sent him to a neurologist. After
We need your input and participation to many tests, he learned that he had MS.
plan fun activities and programs.
“I went into a deep depression. I
associated MS with Jerry Lewis and
Contact: Elana MacGilpin
the telethon,” remembers Michael.
1-800-493-9255 x115, or
“Within eight months, I couldn’t work
[email protected]
or walk without being exhausted or offJoin the National MS Society’s
balance. I couldn’t climb stairs.”
PEN PALS directory!
Michael decided never to take life
for granted again. “You don’t even
Make a new friend and exchange
think about the little things, like brushletters or email with other kids and ing your teeth, you just do them,” says
teens, ages 8-18, whose parent or
Michael. “One of my symptoms was a
relative has MS.
tremor, which was severe. I would get
toothpaste all over the bathroom.”
ENROLL OR LEARN MORE, CONTACT:
Along with the diagnosis, Michael
Amber Stalker, 1-800-493-9255
[email protected]
endured many other hardships. “My
8
Winter 2002
1-800-493-9255
PROGRAMS
father died shortly after I lost what I
considered to be my health, I had to sell
the house that I built in 1977, and my
brother and I had to sell our successful
landscaping business,” he recalls.
Eventually, Michael accepted his
MS and began moving forward. He
contacted the Central New England
Chapter for information on the disease,
services, programs, and financial aid.
Michael became active. He worked
with the planning committee for the
“Celebration of Life” MS community
fundraiser and attends Chapter events.
A member of the Monachusett SelfHelp Group (Fitchburg area), he
recently joined the Chapter’s legislative
advocacy group, Action Alert Network.
In July 1993, Michael moved into
Foxglove Housing for the Elderly in
Harvard, which also accepts people
with disabilities. Four months later, he
met his future wife at church. In April
1994, he and Nancy, his “Earth Angel,”
married. He then began working on a
path through the trees behind Foxglove
to enable residents to walk to a nearby
store without being on a busy road. He
named it “Millie’s Path,” after his
mother who recently passed away.
Unexpectedly, he found a similar
opportunity when the road his church
was on was widened. “I guess they
liked my work, because I got a lot of
calls. It changed my life,” explains
Michael. “It was the first time since my
diagnosis that I felt useful.”
Part of the church property was an
overgrown woodland area. A garden
club member asked Michael to develop
a path there. “I didn’t start out to create
an accessible trail, but I realized that I
had to because some parishioners used
wheelchairs,” explains Michael.
www.msnewengland.org
The path launched his second
career, landscape design. “It allowed
me to be creative, while keeping me off
the streets,” remarks Michael.
This new interest led him to design
accessible woodland trails. To date,
Michael has created four trails,
including Ginny’s Woodland Path in
the new Harvard Park, named for
Virginia Thurston, past president of
Worcester County Horticultural
Society, and the Bob Reed Wetland
Trail, named after the former head of
the Harvard Conservation Commission.
Michael also has a renewed love of
walking. While he uses a cane and is
easily fatigued, he participates in
charity walks, including the “Annual
Loaves and Fishes Walk for Hunger.”
His goal is to complete a five-mile walk,
and to participate in the Concord MS
Walk next spring.
HONOR THY
MOTHER & FATHER
Nominations for the 2003
Mother of the Year
&
Father of the Year
are now being accepted.
CANDIDATES MUST HAVE MS
AND A STRONG COMMITMENT TO FAMILY
AND TO COMMUNITY ACTIVITIES.
To request a nomination form,
contact Kara LaChance
1-800-493-9255
[email protected]
or visit:
www.msnewengland.org/parents.html
MSConnection 9
R E S E A R C H
SMALLPOX VACCINE: REVISED
RECOMMENDATIONS
ince 1946, the
ccording to the Centers for Disease
Society has invested
Control and Prevention (CDC), no
over $300 million in
person with a weakened immune sysresearch that laid the
tem (e.g., by leukemia, HIV, certain
groundwork for MS
types of hematopoietic stem cell transtreatments. Ten years
plants, or immunosuppressant medicaago, there was nothing
tions) should be exposed to the smallto impact the course of
pox vaccine. In rare cases, people who
MS. Then in 1993 came
fall into these groups can have serious,
Eli Lipcon
Betaseron. By 1996, two
possibly life-threatening complications.
more disease-modifying drugs were
Therefore, a person with MS
approved, Avonex and Copaxone. This whose immune system is suppressed by
past spring, Rebif became the fourth.
treatment with Novantrone®, high-dose
All these drugs can reduce future
corticosteroids, or other immunosupdisability and improve life for many
pressant agents, including (but not
people with MS. And now, Novantrone limited to) methotrexate, azathioprine,
can treat MS progression.
or cyclophosphamide, or has undergone
It is critical to begin therapy before a hematopoietic stem cell transplant:
irreversible damage occurs, yet current Should not get the vaccine unless
treatments may not be effective for all. exposed to the smallpox virus.
One new approach is combining existShould not be exposed to the vacing therapies, such as Novantrone and cine by contact with a family member.
Copaxone; another is the monoclonal
antibody Antegren and Avonex.
A family member of an immunosupScientists are looking at altering
pressed person with MS:
immune function in MS, including
Should not get the vaccine unless
CTLA4-Ig, which inhibits T-cells from exposed to the smallpox virus or required
attacking myelin, and Intravenous Im- to receive vaccination in the line of duty.
munoglobulin (IVIg), which has benefits in other autoimmune diseases. As A family member of an immunosuppressed person with MS, who is
this newsletter reports, positive early
required to be vaccinated:
trials of cholesterol drugs, called statins (e.g., Zocor, Lipitor), show effect on Should defer physical contact with
the immune system and inflammathe immunosuppressed person until the
tion; and the pregnancy hormone
vaccine site heals (up to three weeks).
Estriol seems to reduce lesion activity.
While we still have a long way to
WHAT ABOUT A FLU SHOT?
go to accomplish our mission, it’s excitHaving MS is not in itself a reason not to
ing to see the pace of development
receive Flu vaccine, but the decision should
over the last decade. The research
be made on an individual basis in
investments that your contributions
consultation with a physician.
enable are clearly bearing fruit.
Research Advocate
S
10 Winter 2002
A
1-800-493-9255
R E S E A R C H
nteresting things are happening at
the Brain Imaging Lab in the Dept.
of Psychiatry at Dartmouth Medical
School. Asst. Prof. Heather Wishart,
PhD, and the Director of the Lab, Prof.
Andrew Saykin, PsyD, ABPP, are
experimenting with an evolving
technique, called functional MRI
(fMRI). People with MS undergo scans
while performing cognitive and motor
activities, to determine if changes in
the brain can be seen and measured.
Wishart's interest in MS was
sparked ten years ago by a young
woman she knew during graduate
school who had severe MS. On arrival
at Dartmouth five years ago, she saw
Saykin's pioneering brain imaging
work, quickly realized its potential for
MS and suggested the project.
"We are adapting the latest
structural and functional brain
imaging methods and taking the
research in new directions to help
clarify changes in MS," said Wishart.
"It would be wonderful if it's shown
that the adult brain is adaptive; the
challenge would be how to promote
adaptation in people who have MS."
"With the latest imaging techniques, we can measure disease related
changes in the brain, such as lesions
and atrophy, and track them over time
to help evaluate therapies," said
Saykin. "By integrating these anatomic measures with fMRI, we can also
examine the reorganization of brain
activity and measure changes that are
benefical, as the brain works around
and recovers from the MS Lesions."
Lab Study Shows Cholesterol
Drugs May Regulate Immune
Response in People with MS
Statins, oral drugs that lower cholesterol, were shown in test tubes to inhibit
immune responses of cells taken from
people with MS [reported by Dr. Oliver
Neuhaus (Karl-Franzens-Universitat,
Graz, Austria), April 2002, AAN; and
Oct. 8, 2002, Neurology].
Simvastatin was the most potent,
followed by lovastatin and mevastatin.
Interferon beta showed similar effects,
and in combination the two drugs were
even more effective. However, statins
also stimulated the release of some
messenger proteins known to increase
inflammation.
Clinical trials are needed to
determine if these drugs can safely
treat people with MS.
SMALL TRIAL SHOWS A
PREGNANCY HORMONE
REDUCES MS LESION ACTIVITY
In a small-scale, early-phase trial of the
hormone estriol, women with relapsingremitting MS showed decreases in
brain lesion activity (detected by MRI)
and immune responses, suggesting
additional study of estriol to determine
longer-term efficacy and safety.
Rhonda Voskuhl, MD (UCLA) and
colleagues report their findings in the
October 2002 issue of Annals of
Neurology. The study was funded by
the National MS Society. Dr. Voskuhl
and co-author Nancy Sicotte, MD, are
Harry Weaver Neuroscience Scholars of
the National MS Society.
For a complete report of these & other
research studies, call 1-800-493-9255, or visit:
www.nationalmssociety.org/research.asp
Research in Profile
I
www.msnewengland.org
MSConnection 11
A D V O C A C Y
Advocacy
Health Insurance
Federal, state, and private health plans
are shifting towards increases in
premiums and co-pays, and caps on
prescription drug benefits. The
Chapter is tracking these trends and
the impact on people with MS. Your
feedback on these and other public
policy concerns is requested. Contact
Michelle Dickson, 800-493-9255 x146,
[email protected].
FEDERAL UPDATES
Medicare Prescription Drug
Benefit
Congress failed to pass a Medicare
Prescription Drug benefit before the
Congressional year ended in October.
Advocacy efforts towards securing a
prescription drug benefit continue.
NIH Funding
An action alert was recently sent to
members to urge Congress to vote to
increase funding for the National
Institutes of Health, which conducts or
funds MS research. For more info, log
onto www.nationalmssociety.org.
Advocacy Volunteers
are where the action is...
Join the Action
Alert Network!
Contact Michelle Dickson
1-800-493-9255 ext 146
12 Winter 2002
NEW HAMPSHIRE
Government Relations
Committee
The Committee is still reviewing public
policy issues, but has identified
accessible parking and Medicaid
regulations for upgrades in medical
equipment as beginning priorities.
Direct feedback to michelle.dickson@
mam.nmss.org or 1-800-493-9255 x146.
Advocacy Training
Teleconference
New Hampshire residents participated
in an advocacy teleconference with
topics that included an overview of the
National MS Society’s public policy
priorities, the N.H. legislative process,
and opportunities to get involved. A one
hour audiocassette of the training,
“Getting Involved in N.H. Legislative
Advocacy for MS,” is available by
calling 1-800-493-9255 and asking for
the Dora Lipcon Lending Library.
MASSACHUSETTS
MS PASS Eliminated!
On October 10, Acting Governor Swift
responded to the economic crisis by
issuing devastating cuts to State programs, totaling $202 million. MS PASS,
a state funded program providing care
coordination and financial assistance to
people with MS was eliminated, and
other health and disability programs
were hit hard. MS advocates must
remain steadfast in the wake of these
cuts. The Chapter is responding to the
needs of its members served by MS
PASS by reviewing options for offering
its own care coordination services.
1-800-493-9255
A D V O C A C Y
Pharmacy Medicaid Reimbursement Rate Changes
The Chapter submitted testimony to
urge the State to negotiate a fair
Medicaid reimbursement rate, enabling
pharmacies to continue to serve
Medicaid customers. The State decision
to adjust this rate in favor of the
pharmacies resulted in CVS and
Brooks remaining in the program.
There is no word yet if Walgreens and
independent pharmacies will continue
to accept Mass Health.
Personal Care Attendant Wage
Increase Hearing
The Chapter and several members
testified at a recent hearing on a
proposed hourly wage increase of 22
cents for State funded PCA workers.
The Chapter’s position is that this
increase is inadequate to maintain the
workforce, particularly since no health
benefits are provided. The State
rendered a decision to maintain this
proposed increase. Another wage
review is slated for next year.
Olmstead Report
The State has released “Enhancing
Community Based Services: Phase One
of Massachusetts Plan." The plan was
developed in conjunction with the
Olmstead Advisory Group, a steering
committee and an inter-agency
leadership team. The report includes
recommendations to shift facility-based
long term care to community care, and
enhance community options for seniors
and people with disabilities. The
Chapter will continue to advocate for
implementation of the plan. A copy of
the plan can be downloaded at
www.mass.gov/eohhs.
www.msnewengland.org
Legislation
The Government Relations Committee
will identify and prioritize bills to
support following the December filing
date. For the first time, the Chapter is
filing legislation. Our first bill pertains
to a study/pilot project for accessible
transportation for work and community
living for people with disabilities. Our
second bill requests that a study be
commissioned regarding the needs for
specialized long-term care geared
towards younger adults with
progressive neurologic conditions.
MS Lobby Day
on Beacon Hill
save the date!
April 8, 2003
Public Rally Speeches
Legislator Visits
HIGHLIGHT PUBLIC POLICY ISSUES
IMPACTING INDIVIDUALS AND
FAMILIES LIVING WITH MS
Join the MS Community
Increase Awareness of MS
The Massachusetts Fiscal Crisis
Demands our Issues NOT be
Forgotten.
Regional transportation provided
Details in MSConnection, Spring 2003
MSConnection 13
P R O G R A M S
FOR YOUR INFORMATION
FOR SALE: Purple Action Ranger 2 elec. w-chair.
Mid-wheel drive, new battery. $8K new, asking
$1K. [email protected], 508-634-3986.
FOR SALE: Permobil multi-position elec. w-chair,
tilt & lift. Mint cond. $13K new, sell for $1K. Needs
battery. [email protected], 508-634-3986.
FOR SALE: '88 Ford Econo van 1500. 98K mi.
Power windows & door locks, cruise cntrl, AC, wchair lift & lockdown strap. New transmission
installed at 75K mi. Runs good, good cond.
Asking $2,500. Tom or Denise, 603-429-2791.
FOR SALE: Portable Hoyer lift. Easily disassembled. Jerry, 781-862-8125 [email protected]
FOR SALE: Walker. IV pole on wheels. best offer.
Jerry, 781-862-8125, [email protected].
FOR SALE: Patriot man. w-chair. Black, 26lbs,
detach arm & leg rests., special cushion & storage
bag. $200. 781-862-8125. [email protected].
FOR SALE: Rascal motorized w-chair, barely
used. Disassembles, swivel seat, moveable
handles, O2 holder. Rubber wheels. Rchrgble
battery. Pd $6K, asking $2K. 508-624-6797.
FOR SALE: Invacare Pro-T lightweight man. wchair. Rigid frame. Never used, custom. $1,500 or
best offer. 781-749-6755, [email protected].
FOR SALE: Easy Stand, standing frame. $1,500
or best offer. 781-749-6755, [email protected].
FOR SALE: 2000 Chevy 1500 Van. Ricon full
auto lift. Hi Top conv. by Explorer. Leather interior,
1 year left on warranty. Under 14K mi, excel. cond.
All the toys. $25K or best offer. 603-747-1439.
FOR SALE: Amigo 3-wheeled scooter w/power lift
seat, basket, solid tires. $600 or best offer. Diane
617-825-6631, [email protected].
FOR SALE: 1993 Plymouth Grand Caravan,
excel. cond. approx. 85K mi., lowered floor,
accessible ramp, fully loaded for a person w/
disability, price negotiable. Dan, 978-774-8309.
ITEMS LISTED WITHOUT CHARGE, AS SPACE PERMITS. MORE
LISTINGS ON WWW.MSNEWENGLAND.ORG
14 Winter 2002
Dora Lipcon Lending Library
New Additions
Books
Barrier-Free Travel – A Nuts and Bolts
Guide for Wheelers and Slow Walkers,
by Candy Harrington.
The Disabled Driver’s Mobility Guide, by
the American Automobile Association.
Insurance Solutions – Plan Well, Live
Better, by Laura D. Cooper, Esq.
Videos
Update on Multiple Sclerosis:
Diagnosis, Treatment, & Management,
Part I, by Patricia K. Coyle, MD, Aaron E.
Miller, MD and Fred D. Lublin, MD.
Update on Multiple Sclerosis: Living
with Short- and Long-Term MS, Part II, by
Patricia K. Coyle, MD, Aaron E. Miller, MD
and Fred D. Lublin, MD.
Now More Than Ever, 10 min. research,
http://www.nationalmssociety.org/
Audio
Working but Worried, Central New
England Chapter, interactive teleconference held Sept. 19, 2002, by Bruce
Wright, of Wright & Associates, and
Amber Stalker, Asst. Director of Chapter
Programs.
CD
Fall Down Laughing, by David L. Lander.
First person account of coping with MS,
by this well-known actor.
Pamphlets
Choosing the Right Health-Care
Provider, National Multiple Sclerosis
Society, 2002.
To borrow publications, call 1-800-4939255 or visit www.msnewengland.org.
1-800-493-9255
V O L U N T E E R S
Band of Brothers
A
ll it takes is one visit to MS
Vacation Week and almost automatically you're drawn to one person,
TJ Kelly. If you didn't ask, you'd
probably guess that he was running the
whole show, in a very warm and open
manner. His 12 years on-site certainly
lends itself to that impression. But
then you find out no, this fellow is a
volunteer! Wow.
TJ Kelly is relentlessly positive, the
embodiment of an MS volunteer. He is
a personal care assistant (PCA) to his
best friend, Mike Capobianco, plus
he organizes the talent show, and is the
all 'round go-to guy for help with
anyone and anything else.
He lives in Maine...what's he doing
here? Mike and TJ have been best
friends since they attended Marian
High School in Framingham, Mass.
They had a rock band called Sacrifice
that once beat Aerosmith in a 'Battle of
the Bands' in Dover, Mass. "Mike was
the best guitarist," says TJ, "he could
play on one guitar what it took two
guys on a record to play."
When he was in his late 20s, Mike
started experiencing blurred vision,
Volunteer
Recognition
Dinner
Giggles Comedy Club/
Prince Pizzeria
January 12, 5-8pm
Rt. 1 So., Saugus, Mass.
Contact Brenda
Barbour
www.msnewengland.org
TJ Kelly (center) and Mike Capobianco
(right) onstage in the MS Vacation Week
talent show, with TJ's brother (left).
and was officially diagnosed with MS
around 30. "The band broke up
because Mike couldn't play anymore,"
says TJ, "I couldn't see myself playing
with anyone else but him."
Then in 1990, Mike called and told
TJ about his first year at MS Vacation
Week, and how he loved it and how he
had to have a PCA to go back next year,
because of his advanced disabilities. "I
said, 'Mike, if you can go, I'll go,' but I
didn't know how to do anything, how to
change catheters or anything.
"I called my wife and told her to
charter a helicopter, I'd be waiting on
the roof for her to pick me up and take
me home. I was scared to death
because it was a whole new level of
being with my friend. But, at the end of
the week, it was a very magical feeling."
That was 12 years ago. Wow.
MSConnection
Read it Online!
www.msnewengland.org/publications.html
•same stories •same resources
•no paper •no postage
MSConnection 15
F U N D R A I S I N G
Increase Your Income
While Fighting MS
I
n times of lower interest rates, gift
annuity payments can generate more
useable income than you now receive
from your investments. In addition to
earnings on annuity funds, gift annuity
payments include a return over time of
a portion of the amount used to fund
your annuity, thereby resulting in
higher total payments than you might
otherwise enjoy.
Example: Mrs. Hughes decides to
make a number of gifts through her will
and other long-range plans. She would
actually like to make those gifts now,
but has decided that she cannot do so
because she may need income from her
assets for future living expenses.
After learning about charitable gift
annuities, however, she decides to
make a gift of $10,000. At her age, she
will receive annual payments of $900,
or 9 percent of the amount transferred,
for as long as she lives, no matter what
the earnings from the amount used to
fund the annuity.
Here’s a summary of this gift
plan and its benefits:
Mrs. Hughes transfers $10,000 for
a gift annuity agreement.
$
She receives $900 each year for
as long as she lives. For the first nine
years of her payments, she pays
federal income tax on less than onehalf of the payment she receives. After
that time, she pays tax on the remaining
amount of the payment as well.
$
She is allowed to deduct $4,800
as a charitable gift for the year the gift is
completed. The exact deductible
$
16 Winter 2002
amount may vary. Check with your
advisor at the time you make your gift.
The amount used to fund Mrs.
Hughes’ annuity is removed from her
estate, saving what could be substantial
taxes that might otherwise be due.
$
Mrs. Hughes enjoys the knowledge
that the gift portion of her annuity will be
used to help end the devastating
effects of multiple sclerosis.
$
Gift annuity rates are going down
substantially in January 2003, making
this an excellent time to take action
and ensure higher long-term income.
For additional information on this and
other gift planning options, please
contact Maura Ridge, 800-493-9255.
COMMUNITY FUND
RAISING EVENTS
December 7: Benefit Dinner Buffet
for MS, sponsored by Deca Marketing
Club of Nipmuc Regional High. Enjoy
music and raffles and support students
who are joining the fight against MS.
6:30-10:30 PM, St. Mary’s Church Hall,
Milford. $15/person, $100/table of 8.
Sarah Gauletz, [email protected],
508-478-5275.
May 3, 2003: The Reminisants,
Fourth Annual Fundraiser for Multiple
Sclerosis - Benefit Dinner Dance. The
Diplomat, Route 1, Saugus, 7 PM. $40,
advance ticket sales only. Tables of 10,
$400. Bob Spitaleri: 781-233-8560.
www.reminisants.com.
To host an event, contact Nancy
Dlugoenski, 1-800-493-9255 x115 or
[email protected].
1-800-493-9255
F U N D R A I S I N G
Marathons,
Mountains, and MS
Wendy Booker takes all comers
lways a casual runner, I ignored
the numbness in my left leg for
several months until a fall at work
finally prompted me to seek medical
help. In June of 1998, I was diagnosed
with relapsing remitting MS.
I decided to see just how far and
how hard I could push back MS, and I
called the Chapter to ask about the
Marathon Strides Against MS team. In
April 2000, I became No. 18,694, and
life hasn't been the same since.
In training for my second marathon,
I heard about climbers with MS planning to climb Mt. McKinley. With help
from TevaNeuroscience, I became the
sole woman on the seven man team,
Climb for the Cause, MS on Denali 2002.
On my husband’s advice, I listed the
pros and cons. As the cons grew, the pros
remained at three. But it was for those
three very important reasons that I accepted the challenge. Foremost was the
mission to show that MS doesn’t mean
you have to give up. Second, to encourage those newly diagnosed to use one of
the MS drugs ASAP. And third, my
own reason, never again in my life
would I be offered such a challenge.
For the better part of a year, I was
away learning to climb on both the east
and west coasts. One aspect you can’t
train for is life at altitude. Motivation,
energy, clear thinking and even eating
and drinking can all be compromised.
We climbed as high as the mountain
would allow, and then turned back.
Even still, we succeeded because we
fulfilled our mission to show what
people living with MS are capable of.
A
www.msnewengland.org
Marathon Strides Against MS team
member Wendy Booker on Denali.
Gratitude sums up my experiences
on Denali in one word. Gratitude that I
was physically able to train for and
climb Denali. Gratitude that I was afforded the opportunity. Gratitude that
I climbed for a cause so important and
personally compelling for me.
I hope that our climb and its
message are as inspiring to others who
are just learning that they have MS,
and that they don’t let it discourage
them from taking on challenges.
27th Annual
Dinner of Champions
Friday, January 24, 2003
Boston Park Plaza Hotel
6pm Reception 7pm Dinner
9:30pm Dancing
Cocktail attire
Chair, Dinner of Champions
Mike Iaccarino, CEO, Epsilon
tickets and information:
Deirdre Moynihan
1-800-493-9255
MSConnection 17
F U N D R A I S I N G
Dressing Well Scores
a Hat-Trick
F
or the third straight year, Dressing
Well: An Evening to Benefit the
National MS Society was a tremendous success, raising over $100,000,
and making its three year total a solid
$200,000. The ballroom at the Westin
Hotel
Waltham
was filled
with 500
women to
view
practical
fashions,
A turn on the stage. (L-R): Jane
provided by
McGrath, Adrienne Howell of Biogen,
Filene's.
Allyson Kennedy Gay, Nancy
Sponsored
Michaels of Empire Loan, Trustee
Mary Beth McIntyre, and Sally Driscoll by College
of Driscoll Insurance. Not in photo:
Savings
Eleanor Uddo of Feigenbaum & Uddo. Consultants,
the evening
featured the fashion tips of Mary Lou
Andre of Organization by Design, Inc.,
and a performance of the Nutcracker,
by Boston Ballet II. Suzanne Bates,
former Boston newscaster and a
communications consultant, returned
for a third turn as Hostess.
State Rep. Rachel Kaprielian (DWatertown, Newton) spoke about the
responsibility each citizen has to make
their voice heard on issues like MS.
Marge Van Houten
moved the crowd when she
spoke about her daughter,
Karen Van Houten, who
was diagnosed with MS at
age 29. Karen and Mary
Lou were old family friends
Marge Van
who reunited and conceived
Houten
the idea for the fundraiser.
18 Winter 2002
MS Cranmore 24
A unique 24 Hour Ski &
Snowboard Experience
F
or the first time in its 60-year
history, the Cranmore
Mountain Resort
(Skimobile Road, North
Conway, NH) is offering a
round-the-clock alpine
event, called The MS Cranmore 24.
The event benefits the Chapter's
programs for people who have multiple
sclerosis in N.H. and Mass.
The MS Cranmore 24 is both a solo
and team endurance alpine event,
featuring skiing, snowboarding, and
telemark skiing—for all ability levels—
over a 24 hour period that pits snow
enthusiasts against the mountain and
the clock to raise money for MS
research and community programs.
Participants in this spring event make
as many runs as they can from Noon on
March 22 through Noon of March 23,
including runs under the lights. The
registration fee of $75 provides a free
lift ticket, pre-event kick off party,
refreshments, entertainment, use of
the sports fitness center, and prizes.
Participants commit to raise a
minimum donation of $250.
Skiers, snowboarders, and telemark
skiers who want to enjoy the picturesque beauty of the Mount Washington
Valley and the well-manicured slopes
of the Cranmore Mountain resort for 24
hours, should call Mary Anne Machis
at the Chapter office, 1-800-493-925, or
email [email protected].
1-800-493-9255
F U N D R A I S I N G
3 Days, 50 Miles,
$1.7 Million Closer to a Cure!
PLYMOUTH EVENING OF STARS (L-R) Arlyn
White, Lynn Anti, Heather Swimm, Donna
Fantasia, Kevin Fantasia, Nicholas Fantasia,
Tom Kane, Woody Chittick, and Carol Khoylian.
F
ive Plymouth County residents
were honored by the Chapter in
September at the Evening of Stars for
their exemplary commitment to ending
the devastating effects of MS through
their work as volunteers and as leading
participants in Chapter fundraising
events. The honorees were Heather
Swimm, Lynn Anti, Tom Kane, Carol
Khoylian, and Kevin Fantasia.
Anthony Everett, WCVB-TV5
Anchor and Chapter Trustee, served as
Master of Ceremonies for a sold out
crowd of 300 people at the Sheraton
Inn of Plymouth. Including ticket
sales, a raffle, a live auction, and a
silent auction, the evening raised
$25,000 for research and programs.
Ruth Miller, who owns Special
Tees in Plymouth, served as Chair of
the organizing committee.
Table sponsors included the
Massachusetts Nurses Association,
Serono, JD Chute & Payzant
Realtors, Wells Fargo, Aristocracy,
Entergy, J.A. Donnelly Electric,
Jordan Hospital, One Stop Painting
& Renovating, R.J.F. Homes, Inc.,
Special Tees, and Wee Print Today.
www.msnewengland.org
Thank You Says it All
...Almost!
T
hank you certinaly captures one of
the many emotions felt in
September during the weekend of the
Chapter's first MS Challenge Walk.
But it was such a deeply moving time
for so many that words can't match the
power of the experience. One thousand
registered walkers, 841 on the route,
100 dedicated crew volunteers, and
$1.7 million add up to the largest MS
Challenge Walk in the country.
The only way to do justice to the
spirit of the 2002 MS Challenge Walk
is to do it again in 2003!! Sign up on
the website today for another trek
across Old Cape Cod, September 12, 13,
and 14, and take advantage of
enhanced online donations accounts,
www.msnewengland.org.
Questions? Call the Hotline, 800493-9255 ext. 110.
MSConnection 19
C O M I N G
A T T R A C T I O N S
Details inside!
12/7
Benefit Dinner Buffet for MS, 6:30-10:30 PM, St. Mary’s Church Hall,
Milford. $15/person or $100/table of 8. Sarah Gauletz at 508-478-5275 or
[email protected].
12/10
Beyond Diagnosis, What you need to know about MS, Informal Dinner
Meeting. 6:30-8:30 PM, Greendale YMCA, Worcester, Mass.
12/19
MS Learn Online, Learning to Manage Pain in MS, nationalmssociety.org
1/12
Volunteer Recognition Dinner at Giggles Comedy Club/Prince Pizzeria,
Route 1 South, Saugus, Mass. 5pm - 8pm.
1/24
Dinner of Champions, Boston Park Plaza Hotel
2/20
MS Learn Online, Modifications for Work & Home, nationalmssociety.org
3/22-23 MS Cranmore 24 - Ski Event (Noon to Noon), Cranmore Mountain, NH
4/5
MS Walk: Cohasset, Concord, MA, Easton, Marblehead, Nashua, NH,
Newburyport, Northampton, Portsmouth, NH, Worcester
4/6
MS Walk: Boston, Plymouth, Westport, Springfield, and Manchester, NH
4/21
Marathon Strides Against MS (Boston Marathon)
5/3
Tour the Vineyard, MS Bike Tour, Martha's Vineyard
5/3
MS Walk: Gorham, NH
5/3
The Reminisants, 4th Annual Fundraiser for Multiple Sclerosis - Benefit
Dinner Dance. The Diplomat, Rt. 1, Saugus, 7 PM. $40. Tables of 10, $400.
Bob Spitaleri: 781-233-8560. www.reminisants.com.
5/15
MS Learn Online, Current Research Trends in MS, nationalmssociety.org
5/17
MS Walk: Hyannis, The Berkshires
6/19
MS Learn Online, El Cuidado Clínico de la Esclerosis, nationalmssociety.org
6/21
McCourt Run
6/21-22 Great Mass Getaway, MS150 Bike Tour, Boston to Provincetown
8/10
Falmouth Road Race
8/26
MS Challenge Walk Celebration
9/12-14 MS Challenge Walk. 3 days. 50 miles. Closer to a cure. Cape Cod
101a First Avenue, Suite 6
Waltham, MA 02451-1115
52 Years, Serving Massachusetts & New Hampshire
Central New England Chapter
20 Winter 2002
Non-Profit Org.
U.S. POSTAGE
PAID
National Multiple
Sclerosis Society
1-800-493-9255