scleroderma exchange - Scleroderma Foundation

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scleroderma exchange - Scleroderma Foundation
SCLERODERMA
EXCHANGE
Volume 1, 2011
Published by Scleroderma Foundation/Tri-State, Inc. Chapter
Binghamton, New York
www.SclerodermaTriState.org
M
I
S
S
I
O
N
To provide educational and emotional
support to people with scleroderma and
their families
To stimulate and support research
designed to identify the cause and cure of
scleroderma as well as to improve methods
of treatment
To enhance the public’s awareness of this
disease
Support Group Leader
Highlights and Happenings
R
osemary Markoff: Rosemary retired as a
Support Group Leader in December 2010. As
the former Executive Director, she began the
first Binghamton Support Group in her home
several years ago, after placing a brief ad in the
local newspaper. At that time a small number
of people gathered. Her support group has
now grown to double digits and she has
reached and touched the hearts of everyone
who had the good fortune to meet her and be
under her leadership.
Rosemary’s heartfelt dedication to the
Scleroderma Foundation is ongoing as
she continues to serve as Treasurer of the
Chapter’s Board, advocates for Scleroderma,
attends educational forums and participates
in the annual Binghamton Scleroderma Walk.
We are forever grateful to Rosemary for all she
has accomplished on behalf of the Tri-State
Chapter.
Bianca Podesta: We welcome Bianca
Podesta, who has accepted the role of Support
Group Leader for the Binghamton Support
Group. Bianca has a PhD in Psychology, sings
in the Madrigal Choir of Binghamton and is an
(continued on page 2)
Do you spend all or part of the winter in Florida? We are
considering an event next winter in Florida and would like
to identify our “snowbirds”. Please call or email us with your
winter address.
If You Have Scleroderma, You Need Not Feel Alone...
S
ince its early beginnings, the Scleroderma Foundation Tri-State, Inc. Chapter has been
outstanding in supporting persons with Scleroderma, their families, friends and caregivers. The
motto, ‘If you have scleroderma, you need not feel alone’ is a testament to the caring individuals
who are the support group leaders and assistant leaders.
Our Support Group leaders, mostly patients themselves, offer uncompromising support to
persons and family members introduced to the world of Scleroderma. The support groups offer a
safe place to feel supported and to be refreshed
by food and friendship. It gives members an
opportunity to talk to others who have gone
through similar health challenges, enables them
to support each other and it provides a chance
for everyone to share experiences, practical
suggestions and ways of coping. Support
Groups are also a means to empower members
through education with the use of current DVD
presentations by experts from across the US
and UK. Some leaders further utilize the local
Albany Capital District Support
Group Meeting 2011
talents of their own community by inviting
professionals, authors and experts to attend the meeting as a speaker.
One new group member wrote, “I found the last meeting I attended (which was also my first
time) so informative. In fact, when I saw my Rheumatologist I told her about what I learned
and ended up having a Manometry Test done and found out that the pressures in my esophagus
were 298 and up... She is wondering if I have
a Systemic form of Scleroderma . I have been
diagnosed with Connective Tissue Disease and
(at this time) borderline Pulmonary Hypertension
secondary to CTD. This Scleroderma meeting
is the closest meeting to the disease I have and I
find I really need to meet with others who endure
much the same limits I have...”
Many of our leaders, assistant leaders
and members also seek current information
June Bender - Albany Capital District
Support Group Meeting 2011
at Patient Education Forums offered by
the Tri-State Chapter as well as at the National Patient Education Conferences offered by the
Scleroderma Foundation. The knowledge they gain from these opportunities is invaluable.
Leaders also utilize and direct members to the www.sclerodermavideo.com website which
allows presentations to be viewed in the comfort of home. Some of our knowledgeable
leaders are published authors who have written books and workbooks on the subject of
Scleroderma and donate a percentage of the proceeds back to the Scleroderma Foundation.
Our Support Group Leaders are among some of the most caring individuals. This is evidenced
by the outreach they conduct above and beyond their role in the group. Many take time to listen
(continued on page 2)
Scleroderma Foundation
Tri-State, Inc. Chapter
Founders
Mark Flapan, Ph.D.
Helene Flapan, M.A.
President
Jeff Mace
Vice President
Bruce Cowan
Treasurer
Rosemary Markoff
Secretary
June Bender
Members
Maryann Caliri
Emily Chillino
Andrea Goldstein
Gerold Kirschner
Marc Krieger
Estelle Randolph
Debra Signorelli
Patricia Waszmer
Joanie Weick
Medical & Scientific Advisory Board Co-Chairs
Harry Spiera, M.D.
Mount Sinai, School of Medicine
Robert Spiera, M.D.
Hospital for Special Surgery
Members
Howard Blumstein, M.D.
Rheumatology Associates of Long Island
Avram Goldberg, M.D.
Scleroderma & Raynauds Treatment Center
North Shore – Long Island Jewish Health
System
Jessica Gordon, M.D.
Hospital for Special Surgery
Barry L. Gruber, M.D.
Long Island Regional Arthritis &
Osteoporosis Care, PC
Charles P. Melone, Jr., M.D.
The Hand Surgery Center, Beth Israel
Medical Center
Maria Luisa Padilla, M.D.
Mount Sinai, School of Medicine
Naomi F. Rothfield, M.D.
University of Connecticut
School of Medicine
Lee Shapiro, M.D.
Center for Rheumatology
Executive Director
Jay Peak
Office Manager
Thomas Knapp
Director of Development & Fundraising
Alex Matich
Director of Patient Education & Support
Margaret Sullivan
Communications Specialist
Raymond Moore
59 Front Street, Binghamton, NY 13905
(800) 867-0885 • fax: (607) 723-2039
email: [email protected]
www.SclerodermaTriState.org
2
Spring Into Action
A
fter what seemed like an extremely long winter, I believe that Spring
is finally here. In the Tri-State office that means it’s time for events and
opportunities to visit our friends around the region. A recent trip to the
NYC area gave me the opportunity to attend two educational forums as well
as meetings that tied to two of our twelve walks. It was great to be with our
volunteers and members – face-to-face - after the long winter of phone and
email correspondence.
Walk planning is certainly in high gear. Our walk committees have been
rounding up sponsors, putting together teams and dealing with the logistics
that will ensure successful events. June will be here before we know it, so let’s
all be involved by “stepping out”. With everyone pitching in, the hard work
will produce the funds and awareness that we desire.
As noted earlier, we have begun presenting a full slate of educational events that will take place
around our chapter this year. You can look forward to hearing the experts’ present current thinking
regarding research and treatment. Look for an event near you and later you will find many of the
presentations on sclerodermavideo.com.
Stay tuned as we again begin to push the scleroderma research and awareness legislation that did not
get passed in the last legislative session. A new bill has already been introduced in the Senate (S.649)
and the House version is coming soon. Invite your family and friends to help make a difference by
encouraging congress persons to co-sponsor the bill.
Here’s to warmer weather and lots of ways to keep active. n
Jay Peak
Executive Director
Leader Highlights
(continued from page 1)
ordained United Methodist minister. She
currently works part-time for a small nonprofit counseling ministry. Diagnosed with
the limited form of scleroderma in 2005,
she began writing a journal in 2008 which,
eventually, become central to her newly
published book, Scleroderma: Coping
Strategies www.sclerodermahealth.com. We
thank Bianca for stepping up to the call for
leadership.
Maria Lawton: Maria served as Support
Group Leader for the Albany Capital District
throughout 2010. The Tri-State Chapter would
like to take this opportunity to acknowledge
Maria for her leadership and commitment. We
also thank Maria for her continued dedication
to this group and participation on the Albany
Walk committee.
June Bender: June has resumed the role of
Support Group Leader for the Albany Capital
District.
Formerly the Director of Patient Education
and Support, June was successful in carefully
guiding the Support Group Programs. We
thank her for her years of dedicated service
and for taking on the role of Support Group
Leader. This is added to her role as Secretary
of the Tri-State Chapter’s Board and CoChairperson of the Albany Stepping Out to Cure
Scleroderma walk.
Chanell Gatewood: Chanell has joined the
leadership of the New York City Support
Group with Waveney Golbourne and Barbara
Manning. We welcome her to the leadership
family. Chanel was born and raised in New
York City, the daughter of a United Methodist
Pastor. She worked for the City of New York
for twenty two years, the last ten years as a
Probation Officer, until she was diagnosed
with Scleroderma in 2007. Each year Chanell
works with young doctors at the Hospital
for Special Surgery to help them understand
Scleroderma. She answers questions and
offers a ‘hands on’ approach to their medical
education to increase their knowledge about
Scleroderma. She has been involved in the
support group for 5 years...and has never
missed a meeting! n
Scleroderma Support Groups
(continued from page 1)
with their hearts, offer suggestions, make
referrals based on their own and referred
experience, make visits, answer phone calls, and
offer assistance when possible to those who are
struggling. Many help in organizing and planning
the Stepping Out to Cure Scleroderma walks held
throughout the Tri-State area and encourage
their group members to participate as well.
These dynamic women and men are leaders
in every sense of the word. They are family
people-daughters, sons, spouses, parents, and
grandparents; they are professionals, they are
strong, determined, humorous, compassionate
and caring individuals. We are proud to have
them on our team! n
spiritual and psychological well-being and
recognize how much it is connected to our
physical health? Are we willing to be creative
and discover hidden gifts and abilities? Are we
his year [2010], I spent several weeks
willing not to allow an illness or an unhappy
writing an essay for the student contest,
experience rule our lives? Do we welcome the
sponsored by the Scleroderma Foundation.
opportunity to redefine what is “normal”? Are
In the essay, I focused on the history of
we willing to make adjustments to our lifestyle
scleroderma, its types and classifications, its
to eat well and exercise regularly?
treatments and a brief case study of my aunt,
Are we willing to stay connected with family
Sister Mary Rose Noonan, CSJ (Mamie),
and friends in order to give and receive
who has had scleroderma for longer than I
support? Are we willing to find healthy outlets
have been alive. Then I was asked to think a
for feelings of anger and frustration? Do
bit further and write about how my aunt has
impacted my own life and the life of my family. we refuse to call ourselves “victims” and
“invalids”? Are we willing to keep our dreams
There are just so many life lessons we have
active even if we have to re-evaluate them? Do
learned from Mamie. Some of those lessons
we let our pain and suffering make us more
come from her living with scleroderma, I’m
sure; others come from her own gifts of nature sensitive to the pain of others? Are we willing
to do as much as we can for ourselves but let
and personality.
others help at times? Do we give ourselves
One of the main lessons we have learned
credit for being “courageous”? Do we meet
from Mamie is that, while we may lose
life with good humor and good friends?
control over many things in life, we always
In her living
are “in charge” of
with scleroderma,
our attitudes. Austrian
Mamie has also
Holocaust survivor
taught us the
Viktor Frankl talks
importance of
about a few guards
choice in our lives.
who secretly brought
J.K. Rowlands, ragsthe imprisoned Jews
to-riches author of
food and comfort.
the Harry Potter
Frankl concludes that
series, says “It is
everything may be
our choices that
taken from a person
show what we
but one characteristic:
truly are, far more
“the last of the
than our abilities,”
human freedoms—to
Mary Rose and Sister Mary Rose
(Harry Potter and
choose one’s attitude
the Chamber of Secrets). Our Mamie is a
in any given set of circumstances, to choose
born optimist, but I think her choices have
one’s own way,” (Man’s Search for Meaning).
kept her so. On a daily basis, she chooses to
Mamie’s life has been an example of that
keep herself as healthy as possible with the
truth to all of us. Watching her deal with
right combination of medical help, attitude,
scleroderma has led us to ask ourselves some
support, prayer and humor. She chooses
questions: do we believe that resiliency is
to be a person “living with scleroderma”
possible, that each day has new opportunities
rather than a “victim” with the disease. She
to begin again? Are we willing to join the
chooses to believe that when things go right,
human race in feeling vulnerable, in losing
it is a blessing, and when things go wrong,
some control, in seeing changes in personal
it is a challenge. She chooses to believe
relationships, in feeling dependent, in dropping
that misunderstandings and hurts provide
our desire to be perfect? Are we willing to take
opportunities for growth. She chooses to
care of our
believe than even when limitations and
struggles abound, we must be people who
The Scleroderma Foundation in no way endorses any of
invest in healthy relationships and emotional
the drugs or treatments in this newsletter; the information
wellness. She chooses to believe in the
is provided to keep its readers informed. Because
the manifestations and severity of scleroderma vary,
importance of hope in our search for quality
individualized medical management is essential. Therefore,
of life. Mamie chooses to love her friends, her
it is strongly recommended that all drugs and treatments be
family, her faith and herself, and she does it so
discussed with the reader’s physician(s) to assure proper
well.
evaluation and treatment. If we have inadvertently omitted
Balance, choice, attitude, humor, hope, love
or misspelled your name, please let us know by calling
…Our Mamie has taught us, through her very
Mamie and Scleroderma
by Mary Rose Noonan
T
self and her living with scleroderma, how
important these characteristics are for all of
us. I hope Mamie recognizes both the depth
of her impact on us and the depth of our
love for her. In the same way, I hope that
all of you who are living with scleroderma
realize that you are amazing people! n
Mary Rose Noonan, age 16, is a high
school student in Utica, NY. Her aunt, Sister
Mary Rose Noonan, CSJ, is Director of
Communications for the Sisters of St. Joseph
of Carondelet in Latham, NY.
Sister Mary Rose writes: “I was so moved by
Mary Rose’s essay. Throughout my years of living
with scleroderma, I have experienced pulmonary
hypertension, the loss of all my toes and nine fingers,
telangiectasias over most of my face, hand and
gastrointestinal tract, Barrett’s esophagus, severe
anemia and even an early-on diagnosis of chronic
kidney failure. My niece’s essay reminds me not only
that she is maturing into a beautiful and kind young
woman but also that the human spirit touches other
people much more deeply than all of the physical
symptoms of scleroderma put together!” By the
way…she won the contest!
2011 Educational Forums
September 17, Albany, NY
12:00 pm - 4:00 pm
Albany College of Pharmacy and
Health Sciences
September 24, Rochester, NY
12:00 pm - 4:00 pm
University of Rochester Medical Ctr
October 15, Sommerville, NJ
Delaware Valley-Tri-State Joint Chapter
11:30 am - 3:30 pm
Good Sheppard Lutheran Church
November 12, Syracuse, NY
12:30 pm - 4:00 pm
St. Joseph Hospital Health Center
November 19, New York, NY
12:30 pm - 4:00 pm
Hospital for Special Surgery
Tri-State Educational Forums are free to
attend. Go to www.SclerodermaTriState.org
for speaker line-up and other information.
800-867-0885.
3
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Karla Hayes
Lee Heaviside
Patricia Heer
Janine Hernandez
Claire Holtyn
Suzi Hornbeek
Susan Hughes
Anna Hull
Peter Hunt
Irma Hurban
Francine Hutnik
Rosemarie Iacampo
Bianca Iacullo
Dolores Infante
Josephine Interrante
Chandrouti Jagroop
Dawn Johnson
Rosa Johnson
Richard (Dick) Kearns
Karen Keohane
Emily King
Lucille Konstandaras
Marissa Kopolovich
Jayne Kornfeld
Ellen Kossoff
Dana Kotkin
Irene Kramkowski
Marc Krieger
Ronald & Thea Krongold
Randy Kronish
LaRae Kuhar
Charley Henley
Kupolovich
J Kutnietnski
Manuela Lago
Nelli Lago
Jennifer Large
Rosemarie LaRiccia
Carolyn Laura
Clauda Lavertu
Pam Lawlor
Maria Lawton
Eileen Lemley
Kathleen Leutze
Rabbi Richard Levine
Betty Levy
Patricia Linden
Ray Littlejohn
Betty Lockwood
Michelle Lombardi
Loschiano Family
Bette Lowen
Jodi Lynn
Jeffrey Mace
Tommy Macri
Tiese Mahabir
Eileen Malack
Linda Malatesta
Doreen Mals
Susan Manchester
Rosemary Markoff
Amelia Martino
Marion Massey
Irving Mastin
Fay Keller McElveen
Renee McElveen
Brenda McLaughlin
Pat McLaughlin
Joseph Meaney
Doris Meleniak
Felicia Melynk
Marlene Mendelson
Magdalena Mendoza
Janice Messina
Christine Metz
Margaret Mieras
Darya Miller
Dolores Miller
Olivia Erani Miller
Sherry Miller
Carmela Mongillo
Connie Monroe
Shelly Monterville
Maureen Moore
Julie Mooso
Carole Morell
M. Morgan
Irene Mucullo
Sheri Mulreed
Irene Mulyca
Nancy Munn
Natalie Murdolo
JoAnn Murphy
Carol Murray
Tullio Muscariello
Barbara Musco
Rachael MusicalEckrott
Kim Nellis
Beth Newham
Josh Nixon
Mary Rose Noonan
Karen O’Callaghan
Eileen O’Hara
Denise Palatsky
Diane Pandolfi
Suzzane Parras
Pam Pasquantino
Margaret Paxos
Tina & Joe Perri
Joseph Piegari
Noreen Platten
Maria & Louis Polak
Helen Polenz
Carol Porcino
Linda Quick
Ed Quinn
Barbara Quinn-Connolly
Kristine Raimondi
Team Raindrop
Debra Rainey
Susan Ransom
Mary Alice Reiger
Wanda Reynolds
Elizabeth Riley
Cindie Ritzema
Beth Rohme
Claudine Rojas
Wendy J. Rolon
Sue Roma
Elizabeth Romacho
Serena Roman
Moira Rooney
Frank Rosenberg
Alfreda Ross
Shenise Ross
Crystal Rozelle
Judy Rucinski
Jean Ryan
Robert Santoriello
Patrick Scavantino
Gina Schaffner
Adriane Schorr
Lee Shapiro
Betzi Sheff
Kathleen Sherman
Ronnie Shulman
Rojene Simms
Lynn Sindoni
Bonnie Siverman
Sissy Skehill
Debbie Smookler
Nancy J. Sokil
Allen Sparrow
Dr. Harry Spiera
Dr. Robert Spiera
Sharon Zitomer
Sternheim
Eleanor Stone
Kathie Sullivan
Nancy Sumner
Rebecca Sutton
Marjorie Swayne
Mary Ellen Szarafin
Debbie Tascone
Patricia Taylor
Kathy’s Team
Heather Tielens
Donna Toombs
Lisa Tortolani
Donna Toth
Kimberly Touron
Sandra Traub
Bob Truman
Susanne Turner
Rica Ty
Erin Urkiel
Rachela Valdes
Mary Ann Vella
Roxanne Vogenitz
Marian Wagner
Monica Waring
Patricia Waszmer
Joanie Weick
Jeffrey Weinberg
Paul Weintraub
Jill Welch
Phyllis Wikoff
John Wisdom
Starr Wisdom
Michael Wojnovich
Sandy Wright
Josephine Zachufry
Maple Ave Middle
School 8th Grade
Teachers
5
The Doctor Is In
by Robert Spiera M.D.
Q
My eldest daughter was diagnosed with RA
and her doctor is suggesting she try methotrexate.
I believe some in our group have had or are
taking the same drug. Any thoughts as to side
effects or effectiveness?
A. Methotrexate is a
medication with a well
established track record of
efficacy in the treatment
of rheumatoid arthritis.
It does afford a benefit
to most patients in terms
of joint pain, swelling,
and stiffness, and also
helps prevent rheumatoid arthritis from causing
“erosions” – structural changes to the joints that
once sustained are irreversible. It is generally
fairly well tolerated. Some patients can experience
nausea or even fatigue, particularly the day or day
after they take the medication but that tends to
improve over time. Patients can less commonly
experience hair thinning or sores in the mouth
but some of these features can be ameliorated
by taking folic acid supplements in addition to
methotrexate. The main “organ” side effect of
concern with methotrexate is liver irritation and
it is important to assure that the patient does not
have significant liver disease prior to beginning
methotrexate and that they minimize other
potentially liver toxic exposures such as alcohol
consumption when on methotrexate. The benefit
of methotrexate in the treatment of scleroderma
is less clear. There have been some suggestions
that it may have some benefit in terms of
helping progression of skin disease but that
does not seem to be a very powerful effect. In
patients with scleroderma and significant muscle
inflammation, methotrexate can be helpful in
addressing that manifestation. There have been
instances of lung toxicity in patients treated with
methotrexate, and that can be a theoretic concern
in patients with scleroderma particularly if they
have lung involvement, although generally it is not
that difficult to distinguish progression of lung
disease from methotrexate toxicity in the lung. As
with other medications, if a patient is treated with
methotrexate, they need close supervision by their
treating physician. n
Robert Spiera M.D. is an Associate Professor of
Clinical Medicine and the Director of Vasculitis
and Scleroderma Programs at Hospital for Special
Surgery, in New York City. Dr. Spiera is active in
the care of patients with scleroderma, both as a
clinician and a researcher. Dr. Spiera is also cochair of the SF Tri-State Medical Advisory Board.
About The Doctor Is In
Please send questions to [email protected]
with a subject line titled The Doctor Is In.
6
Walk Season is Quickly Approaching!
W
e begin our 10th Anniversary of Stepping Out To Cure Scleroderma on June 4th and round out
our events on June 26th. Last year the walks enrolled 3,100 registrants and raised $370,000. The
money that you raise helps support our three fold mission of support, education and research.
Since 2000, your contributions to the chapter helped fund over $1.25 million of research within
New York, New Jersey and Connecticut. Money raised also helps sustain fifteen active support
groups, provide educational forums throughout the Tri-State area at no cost to participants and
helps provide each issue of this newsletter to over 5,000 people.
Our goal for Stepping Out To Cure Scleroderma this year is to raise $425,000 and register 3,500
walkers. Please register today and solicit contributions today and every day until you come to the
walk. Every extra contribution you solicit brings us that much closer to finding a cure.
Visit www.youtube.com/sftristate and view the slideshows of Stepping Out To Cure Scleroderma – 2010.
It is a fun experience and raises much needed financial support.
There are three ways to register for the walk. You can (1) pre-register online for $15 by going
to http://walks.SclerodermaTriState.org. By registering on line for your walk you can create a
free customized webpage, which tracks every sponsor you receive online and features pre-written,
ready to send “sponsor me” and “thank you” emails. You can also (2) pre-register via mail for $15
by completing a registration form and mailing the form and money to Scleroderma Foundation/
Tri-State, Inc. Chapter, 59 Front Street, Binghamton, NY 13905 at least one week prior to the walk
you plan to attend. And lastly you can (3) register on the day of the walk at the walk location by
paying the $20 registration fee.
For additional walk, registration or corporate sponsorship information call (800) 867-0885.
Second Annual Scleroderma Foundation Tri-State 5K Run
Please join us on Sunday, June 5, 2011 at the new section of Overpeck Park (Ridgefield Park,
New Jersey) for our Second Annual Scleroderma Foundation/Tri-State, Inc. Chapter 5K Run.
This year it will be orchestrated on an official 5K course. Last year 57 people came to the
inaugural event and as word spreads we are hoping for 150 this year. This event is happening on
the same day and at the same location as Stepping Out To Cure Scleroderma walk. The 5K Run will
precede the walk with day of the run registration beginning at 7:30 a.m. and the race starting at
8:45 a.m. Please pre-register at www.scleroderma5k.org. n
Stepping Out Dates ~ Locations ~ Time of Registration
June 4th Seneca Park
Rochester, NY {9:00 a.m.}
June 11th Island Park
Williamsville, NY (Buffalo) {10:00 a.m.}
June 5th Overpeck Park - 5K Run
(New section of park)
Ridgefield Park, NJ {7:30 a.m.}
June 12th Battery Park
Manhattan, NY {9:00 a.m.}
June 5th Overpeck Park
(New section of park)
Ridgefield Park, NJ {9:00 a.m.}
June 5th
Wantagh Park
Wantagh, NY (Long Island) {9:00 a.m.}
June 5th
Otsiningo Park
Binghamton, NY {9:00 a.m.}
June 11th
West Hartford Reservoir
Hartford, CT {9:00 a.m.}
June 12th Onondaga Lake Park
Liverpool, NY (Syracuse) {9:00 a.m.}
June 12th Beekmantown Town Hall Park
Plattsburgh, NY {9:00 a.m.}
June 12th Crossgates Mall
Albany, NY {6:30 p.m.}
June 18th
Vassar College
Poughkeepsie, NY {9:00 a.m.}
June 26th
Westhill High School
Stamford, CT {9:00 a.m.}
Free stadium blanket OR
golf umbrella
with $250 raised (one per registrant/family)
Registration
Form
Free grocery bag OR water bottle OR
insulated lunch bag
with $50 raised (one per registrant/family)
A registration fee of $20 for those 18 and older should accompany this form. Take a $5 DISCOUNT per registrant if you register prior to
the day of the walk by mailing in this registration form to the SF Tri-State office. Please make copies of this form and continue to collect
sponsors. Turn in additional forms and money the day of the walk. THANK YOU!
A signature is required for each adult in the waiver section below. Parents must sign for all children.
Walk Site:
 Albany  Binghamton  Buffalo  Hartford  Long Island  Manhattan  Plattsburgh
 Poughkeepsie  Ridgefield Park (NJ)  Rochester  Stamford  Syracuse
Last Name _______________________________ First Name(s) _____________________________________________________________
Address ___________________________________ Apt ________ City _______________________ St _______ Zip ____________
Home Phone _____________________ Work Phone ___________________ Ext _______ Email ____________________________________
Team Name __________________________________
Official Use Only
 I am unable to attend, please accept my contribution $ _________
 I am interested in volunteering for Walk 2012.
 I would like more information about scleroderma.
 I am a scleroderma patient.
I am walking in honor of _________________________
C T R G
In memory of __________________________________
Registration Fee(s) $ ______________ Personal donation $ __________________
THIS IS OUR PRIMARY FUNDRAISER. PLEASE COLLECT ALL CONTRIBUTIONS.
Checks payable: SF Tri-State
Contributions Form
Put me on
mailing
$ Contributions
list
Return completed form(s) with check(s) or money order(s) to Scleroderma Foundation/Tri-State Chapter, 59 Front St, Binghamton, NY 13905
An acknowledgment, which serves as a tax receipt, will be mailed to each sponsor if address is provided.
Name
Street Address
City
State Zip
1
s
n
o
uti
2
3
4
c
t
lec
5
l
o
c
se
6
7
8
9
10
a
e
l
P
b
i
r
t
on
WAIVER
Total Contributions $ __________
In consideration of being permitted to participate in Stepping Out To Cure Scleroderma, I hereby, for heirs, my personal representatives and myself assume any and all
risks which might be associated with this event. I further waive, release, discharge and covenant not to sue the Scleroderma Foundation, any chapter, support group,
officer, employee, sponsor, organizer, volunteer or other representative or their successors and assigns or the park or other location, for any and all injuries or damages
of any kind whatsoever suffered as a result of taking part in the event and any related activities. I agree to the use of any photo, film or video of the event for any purpose.
Adult Signature: _________________________________________
Adult Signature: _________________________________________
7
Non-Profit Organization
US Postage
PAID
Binghamton, NY
Permit No. 21
59 Front Street
Binghamton, NY 13905-1701
2011 Tri-State Chapter Membership
W
hy is your membership so important? Your membership shows that you are part
of the scleroderma family, searching for the cause and cure of this often devastating
disease. Your dues of $25 help to make the following happen:
• Educational Forums at the Hospital for Special Surgery in NYC biannually, with
renowned researchers and clinicians. Additional forums are held periodically in
Syracuse, Long Island, Hartford, Rochester, Albany, New Brunswick and other
Tri-State locations.
• Local area support group meetings. Our goal is to have a meeting available for
you within an hour’s driving distance. Many meetings include guest speakers on
a variety of topics of interest. If you have not yet attended a meeting, we urge
you to do so.
• The Scleroderma Resource Library: Books and articles on scleroderma and
videotapes/DVDs of Tri-State and National Educational Forums are available.
• Sclerodermavideo.com: A new website that makes available many of the TriState Chapter's Educational Forum speakers via video streaming.
• Telephone Support: Our professional staff is available to provide support,
information and referral services.
• The BUDS Program matches members with others in similar situations and
needs – “If you have scleroderma … you need not feel alone.”
• Newsletter and Website: Tri-State publishes a newsletter, the Scleroderma
Exchange. The address of the Chapter’s website is www.SclerodermaTriState.org.
• Automatic Membership in the National Scleroderma Foundation: This
provides quarterly issues of the national magazine Scleroderma Voice, access to
educational awareness programs and literature and a discounted registration fee
at the National conference. Tri-State provides at least 30% of its net income to
support the national office research program and other activities.
For further information about any of the above, please call us at 1-800-867-0885.
Remember that gifts of $25 or more include your annual dues. We are confident you
want to be counted as a SF Tri-State member. n
Electronic Newsletters
If you prefer to receive this newsletter electronically and want to stay abreast of Tri-State activities, please
e-mail us at [email protected] or call 800-867-0885
Sign up for your FREE weekly email newsletter at www.scleroderma.org for up-to-date information and
the latest news about research, treatments, advocacy efforts, special events and other activities to raise
awareness.
8
web resources
New address; same information. You can
now visit us on our homepage on the web at
www.SclerodermaTriState.org to keep up to
date with all things Tri-State has to offer.
Scleroderma Foundation
/Tri-State, Inc. Chapter
is on Facebook! This is
a place where people can get information
on fundraisers, forums and other events, but
more importantly this is a friendly place, where
patients and supporters alike can hold discussions and grow from one anothers experiences. So tell your friends and family to visit our
link and like us...because really, what’s not to
like about us ;). http://on.fb.me/SclerodermaTriState
Watch and learn. No seriously watch and learn more about Scleroderma
while finding out about events and seeing your
friends. So subscribe and we’ll see you there.
You’ll see us there...Well you know what I
mean :) www.youtube.com/sftristate
www.sclerodermavideo.com is home to many
presentations given
at Tri-State’s Scleroderma Educational
Forums, enabling presentations to be streamed
(viewed) on your computer. You’ll be able
to watch and learn as physicians, researchers and other healthcare professionals share
insights for coping with scleroderma related
concerns. Relevant, up to date, and informative. So join us.

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