SCLERODERMA EXCHANGE

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 of and cure for scleroderma as well as to improve methods of treatment

To enhance the public’s awareness of this disease

Published by Scleroderma Foundation/Tri-State, Inc. Chapter

Binghamton, New York

Volume 1, 2014www.SclerodermaTriState.org

Change: The Only ConstantWant to watch a video?

We’ve all heard the saying that “knowledge is power”. However, the knowledge that we seek must come from reliable sources or we can soon become overwhelmed by the huge amount of contradictory information that we find. This is the whole premise for the creation of the video website: sclerodermavideo.com.

Each year as Tri-State plans its educational forums, we partner with Bill and Barbara Celnick, owners of Starlight Productions, to record the events. Bill created the website that now has more than 60 recordings available. Bill said, “It is extremely important to give scleroderma patients a reliable source for information. Advances in technology have made it possible to bring the chapter’s expert medical and coping workshops to many more people than was previously the case.”

The chapter makes every effort to bring the most up-to-date information to our forums with speakers who are knowledgeable and experienced in the treatment and management of scleroderma patients. Bill attends the forums and records the presentations. After the recording is approved by the speaker, he posts them to the website.

Change, they say, is inevitable. And our support groups have certainly experienced their fair share in the past year and a half! New groups have sprung to life, leaders have changed their roles and we have experienced the loss of our long time friend Fran Batz, Leader for the Orange County Support Group (NY). Life is like this and we are continuing to adapt and adjust as needed.

June Bender retired after serving as the support group leader for the Albany Capital District Support Group for 9 years. June will continue to chair the Albany Walk and currently serves as Secretary for Tri-State Board of Directors. June and her husband

Rick plan to spend more time enjoying their retirement years. Carla Gage has stepped into the leader role in Albany, and had her first very successful meeting in January.

Matthew Turcotte left his position of Support Group Leader for Buffalo (NY) in January

2014. Group member Kathy Leutze moved ahead and held a group meeting in January and Dr. Mary Margaret O’Neil had an open discussion with the members in attendance, including Betzi Sheff – former leader of the Cooperstown Support Group (NY). Kathy has accepted our invitation to lead the group going forward with Betzi as the group’s assistant leader.

Ruth Saphirstein accepted the role of support group leader of the Greater Hartford area as of January 1st. Sharon LeDue has decided to start a new group which will host its first meeting in Endfield, CT on March 15 at the Enfield Public Library.

Natalie Puccio-Murdolo formed the Bergen County Support Group (NJ) and asked Wanda Reynolds to be her assistant leader.

Meetings started in February 2013 and attendance is growing!

Teri Gerson formed the Union County Support Group (NJ) which began meeting in September of 2012 and remained the leader until mid-2013. Teri and her husband built and moved to their dream home in Maine this past September. At that time, Priscilla Horning expressed an interest in restarting the group. Priscilla secured a new location, RWJ Fitness & Wellness Center and had her first official meeting in November 2013.

Bill Celnick carefully editing Dr. Herzog’s speech from HSS Educational Fall Forum.

continued on page 3 continued on page 3

Mary Beth, Diane Biggs, Charlotte Berkener and Carla Gage sit down to make new plans for the Albany area.

Matthew Turcotte and his two children.

Natalie and Wanda show support at the Stepping Out Walk in Ridgefield Park.

Find out more about the support groups in your area at www.support.sclerodermatristate.org

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A Message from Our Executive Director

Jay PeakExecutive Director

Dare to dreamThe first weeks of each new year are always interesting. We end up looking back as well as ahead to take inventory of where we are. It is the time when we reflect on how things went last year and roll up our sleeves to put legs on the plans and dreams that will make this year a success. Work plans become the basis of support group schedules and promotional brochures; phone calls and emails translate into educational forums; many conversations translate into a Stepping Out to Cure Scleroderma schedule with specific venues and dates. All this happens in partnership with our volunteers. All this happens so that Tri-State can continue to fulfill its mission.

Even with a worrisome economy that produced fewer donations than hoped, overall 2013 was a pretty successful year. We accomplished our program objectives, achieved strong financial return and awareness generation from Stepping Out events and were instrumental in helping the Scleroderma Foundation produce an encouraging program for new scleroderma investigators. We closed out the year by providing an extra $50,000 donation to support the Scleroderma Foundation’s new collaborative research program.

Our desire is to keep expanding our network and most importantly, make sure we are positioned to encourage research and provide help and support to as many Tri-State patients and caregivers as possible. With that in mind, we have started a wish list for volunteers. You can help us fill several gaps we see as opportunities...

•TwoorthreebloggersthatwillhelpuscreateawarenessaboutSclerodermathrough social media channels.•AfewleadersthatwouldliketodevelopStepping Out to Cure Scleroderma events in Westchester County, NY and the Newark, NJ area.•Advocatesthatwouldhelpgetsclerodermamaterialsintotheofficesoflocalphysicians.•Organizersinterestedindevelopingsupportgroupsinareaslike:NY-Elmira, Jamestown, Ithaca, Watertown, Poughkeepsie, Yonkers; NJ – Passaic, Essex, Hudson and Morris counties; CT – New Haven, Norwich.

If you have the desire to help in any of these areas, drop me a line at jpeak@scleroderma.org. I can provide more input about what we would like to achieve with your help.

Men’s Support Group BeginsScleroderma, like many of the autoimmune diseases, has often been referred to as a “women’s disease”. According to statistics, women outnumber men by a ratio of about 4:1. We note frequently that men we know with scleroderma are reluctant to attend support group meetings as the attendees and focus is most often on women. Scleroderma manifests itself in a unique way in men, so their issues and concerns are unique as well. This is likely why we see so few men come to group meetings on a regular basis. There are also other issues unique to the male gender such as upbringing, expectations, and need to control emotions like sadness, grief, and signs of weakness. This causes more stress that adds to the fatigue and pain that are a big part of scleroderma.

We were approached by Eric Goldstein at the 2013 Fall Research Forum. Eric felt that it was important to start an all men’s group and encourage attendance from men with scleroderma in the New York City Region. Partnering with the support of Drs. Jessica Gordon and Robert Spiera, the first meeting took place at the Hospital for Special Surgery in late February. For more information visit our support group page at SclerodermaTriState.org.

Scleroderma FoundationTri-State, Inc. Chapter

FoundersMark Flapan, Ph.D.Helene Flapan, M.A.

Board of Directors Co-PresidentsJeff Mace Bruce CowanVice PresidentMarc KriegerTreasurerRosemary MarkoffSecretaryJune Bender

Members Suzy BallantyneMaryann CaliriEmily ChillinoGerold KirschnerEstelle RandolphFrederick ShawMarilyn SibleyDebra Signorelli

Medical & Scientific Advisory Board Co-ChairsHarry Spiera, M.D.

Mount Sinai, School of MedicineRobert Spiera, M.D.

Hospital for Special Surgery

MembersHoward Blumstein, M.D.

Rheumatology Associates of Long IslandAvram Goldberg, M.D.

Scleroderma & Raynauds Treatment CenterNorth 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

Staff Executive DirectorJay PeakDirector of Development & FundraisingAlex MatichDirector of Patient Education & SupportMary Beth Bobik-KadylakCommunications Manager Jocelyn Bailey BookkeeperKaren De Luke

59 Front Street, Binghamton, NY 13905 (800)867-0885•fax:(607)723-2039email: sdtristate@scleroderma.orgwww.SclerodermaTriState.org If we have inadvertently omitted or misspelled your name, please let us know by calling (800) 867-0885.

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meetings are held via telephone conference call on the third Tuesday of the month. Jan features a guest speaker and there is time for Q&A after each presentation

The Plattsburgh Support Group (NY) started meetings in December of 2012 and the group has slowly built a following. Wendy Faubert, Melody Breen and Lori Roebuck hold meetings at Champlain Valley Physicians Hospital every month to support people in and around their area. They are also very involved with the Plattsburgh Walk.

The New York City Support Group got an extra boost when Tiese Mahabir accepted their invitation to become an assistant leader. Chanell Gatewood also an assistant leader, recently accepted the role of support group leader for the PHA group in her community. Waveney Goldbourne continues to serve as group leader. The addition of Tiese as another assistant leader is just what the group needed to help keep everything going smoothly and prevent leader burnout! We were all saddened by the passing of Fran Batz, support group leader for Orange Co, NY. Fran had served our organization for many years (read more about her story on page 4). However Lori Carey was determined not to let the group fall apart and she accepted the responsibility for the leadership role immediately. Lori surveyed the group and the decision was made to move the group to a more centralized location, Orange Regional Medical Center in Middletown, NY. June (Bisel) Musollino (former assistant leader) and her daughter Andrea Bisel agreed to serve as assistant leaders. Their first meeting was held in January 2014.

“Through 2009 to view a forum presentation required either live attendance or borrowing a DVD from the chapter library. Beginning in 2010, the only requirement to view one of our scleroderma based videos was a computer and a broadband internet connection. Since 2010, total talk views exceed 12,000”, Bill notes.

Those kinds of numbers let us know that the information is being used and the website is providing a valuable way for patients to listen to top-notch speakers and empower themselves with knowledge. This knowledge allows them to better cope with their disease by allowing them to learn some of the terminology that physicians use when communicating with them; to understand testing and why it is being performed; for gathering information about how the disease manifests; and to learn more about the overlapping conditions that frequently occur. An informed patient can ask more intelligent questions and be better at communicating the symptoms they experience to physicians and other allied health providers. At the end of the day, an empowered person is able to make informed choices about the treatment of their disease.

Sclerodermavideo.com can be accessed and will stream right to your computer 24/7. We applaud Bill and Barb for their dedication to create this resource for our patients, families and caregivers or anyone that wants to learn more about scleroderma and overlapping diseases.

...video continuedHeidi Hughart established the North Bergen Support Group (CT) and held her first meeting in November 2013. Heidi identified her philosophy to live by with a quote by Christopher Reeves, “Once you choose hope, anything is possible.” Heidi plans to hold monthly group meetings.

Staten Island Support Group leader, Jeanne Ryan was featured in an interview which was aired during June & July of 2013 on everydayhealth.com. Jeanne spoke about

scleroderma, overlapping RA and how her life has changed since she began to deal with these two autoimmune diseases.

Charlotte Berkner asked her assistant leader Diane Biggs to become the Co-Leader for the Southwestern Albany County Support Group – a role that Diane gladly accepted!

Kitsa Jobeless retired as the Support Group Leader for Northern NJ after 8 years of service. Her daughter Sophia Orzillo also stepped down from her

position as Assistant Leader. A nice thank you reception was held at the September meeting and Anita Ryan took over as the new group leader.

Tri-State Connect was established in April 2013 by Jan (Gnall) Nitti. Previously, Jan served as the Assistant Leader of the Hackensack Support Group. These virtual

Love your doc?The Tri-State office maintains a list of doctors referred to us by our patients and caregivers. If you think you have

a top notch physician, whether a rheumatologist, dermatologist or dentist,

please email us with their contact information:

mbbkadylak@scleroderma.org. We appreciate your help!

change continued...

Wendy Faubert, Melody Breen and Lori Roebuck (pictured l to r) at the 2013 Plattsburgh, NY Stepping Out to Cure Scleroderma Walk.

Providing support and education for scleroderma patients, family members and caregivers. Monthly support without leaving your home.

Each meeting features a guest speaker on topics that are important to help improve coping and well-being.

Tri-State Connect Group Leader: Jan GnallEmail: TSconnect@scleroderma.org

(3rd Tuesday of every month)

Meeting Agenda

6:55pm Call: 1-800-704-9804; Access Code: 284323#7:00pm Sharp – Welcome & Ground Rules

7:15pm – Guest Speaker Joins the Call7:35pm – Question & Answer Period

7:45pm – Tips and Ideas8:00pm – Call ends

Welcome to Tri-State Connect

Jeanne Ryan

Kitsa and Anita

Want to start a support group in your area? Contact Mary Beth Bobik-KadylakDirector of Patient Education & Support at mbbkadylak@scleroderma.org

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Saying Good-Bye to An Old FriendWe are very sad to relay the news of Fran Batz passing on November 22, 2013. Fran was extremely devoted to helping those with scleroderma and their families. She had been coping with the disease for more than 50 years.

Fran began her journey with scleroderma organizations as a support group member. Her first meeting was in New Brunswick, NJ which she stated was a two-hour trip, one way, from where she lived. But the meeting was a turning point for Fran and after attending meetings regularly for six months, she was asked to become president of the United Scleroderma Foundation.

Fran stated she was “shocked” to be asked and after discussion with her husband John, the decision was made that she would give it a try. Around that time, her organization and the Scleroderma Federation were discussing a merger. When the dust settled, the Scleroderma Foundation came to be. Rosemary Markoff remembers that the two organizations had a “tumultuous” relationship. And there was Fran right there in the middle of it all. “Fran was truly dedicated to scleroderma patients and helped to smooth the wrinkles of merger and division of territory.” said Rosemary.

Bill Celnick remembers well how the Orange County Support Group formed after the merger. Bill says that it was an indirect result of the movie “For Hope” a documentary of the life of Bob Saget’s sister which aired in 1997. “The publicity brought Fran many phone calls, said Bill, “and we invited these callers to a meeting which then became the Orange County Support Group. Fran would speak to everyone, no matter where they were, she could empathize with both their pain and their feelings of frustration with the lack of information. She was determined to make a difference.”

As Fran continued her service to the group she was also a frequent volunteer at Tri-State educational forums at the Hospital for Special Surgery. She would help or just ride along as Bill and Barb Celnick set up the equipment to record each session. In 2012, Fran and her group decided to have an educational day of their own. She worked very hard to secure several speakers, provide plenty of take home information, great food (of course) and a relaxed atmosphere of camaraderie. “Fran was one of the very first persons to contact me when I started working for Tri-State”, remembers Mary Beth Bobik-Kadylak. “Her group was the very first support group meeting that I ever attended, which ended in going to lunch together and I had the opportunity to get to know the members better. Fran was constantly encouraging me to ‘try it’ and ‘keep on going’ as the challenges of the growing number of support groups and educational programs began. She was my cheerleader from the beginning. She gave so much of herself to others and she is sorely missed”.

We last heard from Fran after she had some abdominal surgery which prevented her from traveling to the Scleroderma Research Forum in November. However she stated that the surgery was a success and she was feeling better but did not want to overdo anything by traveling at that time. Soon afterward, we got the news that Fran had been hospitalized and was in the ICU. After she passed away, we went through some of our chapter history and found a story that Fran had written about her journey with scleroderma. In closing she said “Scleroderma does not have to be the enemy. As long as you don’t let it control you, you have the power to control it.”

Thank you Fran. Thanks also to your husband John and your children Michael and Michelle for sharing your wife and mother with us. She always credited you for your success. Fran will forever be part of the Tri-State family!4

April 12, 2014Hospital for Special Surgery 535 E 70th St. New York, NY 10021

May 4, 2014Hofstra University1000 Fulton Ave Hempstead, New York 11550

June 2014 New Haven, CT Location TBD

August 9, 2014 Buffalo, NYLocation TBD

September 13, 2014Albany College of Pharmacy & Health Sciences 106 New Scotland Ave Albany, NY 12208 September 27, 2014Norwich, CTLocation TBD October 11, 2014 African American Health Awareness DayRochester Airport Marriott 1890 Ridge Rd. W Rochester, NY 14615

October 25, 2014Rutger’s University 56 College Ave New Brunswick, New Jersey

November 23, 2014Scleroderma Research ForumHospital for Special Surgery 535 E 70th St. New York, NY 10021

2014 Educational Forums

Fran (left) and members of the Orange County Support Group with Mary Beth Bobik-Kadylak.

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Antonietta Chioc-chi from Wallkill, NY shares her scleroderma story and proves how a strong support system and being your own advocate are important in getting answers for your health.

My journey began in the winter of 2004. I was a single 41 year old mom with three children, working full- time as an IT Specialist at the United States Military Academy, West Point and planning my daughter Patricia’s wedding. I thought working all day and running around planning the wedding must be the reason I al-ways felt so exhausted and fatigued, so I blew off the symptoms. I then noticed my fingers starting to swell like sausages and I was having trouble breathing just doing the routine tasks of housework or even walking up our stairs. I also noticed my hands would turn a white, bluish, purple color and I could never keep warm, later on I discovered this was Rayn-aud’s. I would go into work, feeling like I was going to pass out and wondered how I was going to make it through the day.

In November of 2005, I de-veloped a rash around my right eye and cheeks, so de-cided I should go see my primary doc-tor. He prescribed a topical cream and if that didn’t work he would refer me to a dermatol-ogist. With no result, I went to my appoint-ment with the dermatologist Dr. Greenblatt. As he was examining me, he asked me about my sausage like fingers and the hardening and discoloration of some areas of my skin that he noticed. I explained to him this had been going on for some time and had no answers for what was happening to me. He asked me if I had any other symptoms. I explained that I had been anemic was having trouble breath-ing, swallowing and issues with my stomach. He took a biopsy of my skin and after a week of waiting the result was as he had expected; I had scleroderma. He went on to explain

to me what it was, and that I needed to see a rheumatologist for the best help. I left his office and headed straight to see my parents to tell them. I couldn’t tell whether the look on my mother’s face was one of relief or fear as she started to cry. When I asked her why she was crying she said I just saw a movie with your sister this week called “Hope” with Dana Delaney and the woman died of that very thing. At this point we thought all hope was lost as we had no knowl-edge of what my future was going to hold.

As each day passed the scleroderma progressed and I was in need of weekly iron transfusions and blood transfusions. This was a difficult task as my skin had started to harden and get-ting an IV was torture! They decided to put a pic-line in my arm as to make the weekly

transfusion more manage-able. I became weaker and weaker to the point that those around me thought I was not going to make it to Christmas of 2006, as I had spent a better part of that year in the hospital. I knew there had to be something someone could do. My children and family were devastated, but I had an abundance of support from

them and truly some remarkable friends who were by my side.

Then one day while in the hospital, I received a phone call from my daughter Patricia. She told me her mother-in-law had a family friend who had scleroderma and saw a doctor named Dr. David Trentham in Boston at Beth Israel Deaconess Medical Center. He was on a medication and had been in remission for the past 3 years maybe I should try and talk to him. After talking to him, and hearing about the wonderful things this doctor was able to do for him I had hope that this

doctor could do the same for me.

In September 2006, my husband, mother and I traveled to Boston for my appointment. He said you have what we call diffuse scleroderma but I think I can help you. I know the smile

on my face at that moment could have lit up the room. He proceeded to tell me about the medication and the research he had done along with another doctor. They co-authored a book about how it helped people with Scleroderma called “Scleroderma the Proven Cure.” He then placed me on Minocin 100mg, 2x daily and after the first 6 weeks we noticed my skin starting to soften. I was amazed at the results and so

were my family and friends.

My scleroderma came on fast and furious; as one doctor put it, “like a tsunami.” Through it all I had hope and love but most of all, sup-port from those family and friends I love so dearly. I live each day one day at a time even with the daily struggles of it all. I continue to have hope that someday they will find a cure.

I have participated in the annual Scleroderma Tri-State Chapter walk in Poughkeepsie for the past five years and have helped to raise money for research in the hopes that someday a cure can be found and that folks with sclero-derma will not be afraid or think it is a death sentence. I am proof of that. Don’t get me wrong I have some bad days but for the most part, my good [days] always keep me going. I now have two married children and one to go; two of the most beautiful grandchildren and continue to work my full-time job as an IT specialist. I will continue to fight this fight and live my favorite Winston Churchill quote; “Never give in. Never, never, never...”!

Scleroderma Voices: Antonietta Read more of Antonietta’s story online at www.SclerodermaTriState.org

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Getting Ready to Walk

Where to Walk to Cure Scleroderma

2014 National Patient Education Conference

Anaheim, CA | July 25-27, 2014

Register, make hotel reservations and find out more about speakers and programs.

Scholarship applications are also being accepted now – don’t wait!

Visit www.scleroderma.org/conference

opportunity for solidarity as hundreds of people who are affected by scleroderma come together for a great event. It’s a chance to show in person what we so often talk about in spirit, “If you have scleroderma …you need not feel alone.”

Our goal this year is to register 3,500 walkers and raise $500,000. It is ambitious but we can do it together if you ask others to help.

Our walks are not until June but fundraising starts now. There are three ways to register for the walk and begin to raise money. You can (1) pre-register online at http://Walks.Scleroder-maTriState.org; or (2) pre-register via mail by completing the form on the adjacent page and mailing it to us at least one week prior to the walk you plan to attend; or (3) register on the day of the walk at the walk location (note: save $5 on an adult registration fee by pre-registering.)

Can’t attend but want to help?! Register as a vir-tual walker, it is free, and send out emails asking family, friends, neighbors, co-workers, even your employer for help. Whichever way you choose to register please remember that each donation brings us that much closer to our goal – a cure for scleroderma and will also help to sustain our support for patients, family and caregivers. Please make sure to solicit donations today and tomor-row. We are all in this together.

This year marks the 13th year of Stepping Out to Cure Scleroderma for the Tri-State Chapter. We’ll begin our twelve walk season on June 1st hold-ing walks in Binghamton, on Long Island and in Albany and conclude in Stamford, CT on June 29th. Our walks areTri-State’s biggest fundraiser and provide about 60% of our revenue. Because people take the time to secure donations our support groups, educational forums, website, SclerodermaVideo.com, and other chapter sup-port functions are possible, and let’s not forget the thousands we contribute to research each year.

When you register this year please take some time to solicit additional donations as well. This extra effort makes a major difference in the lives of thousands in the chapter, across the country and around the world. In 2013 we enrolled 3,100 registrants and raised $436,000. Since 2000, the donations you secured helped fund over $1.5 mil-lion in research in the Tri-State area (NY-NJ-CT), in addition to sustaining our 21 active support groups with more on the horizon in 2014. This all wouldn’t be possible without you Stepping Out to Cure Scleroderma!

We invite all people, patients, caregivers, family, neighbors and friends; students, teachers, nurses and doctors to join us for a day of celebration. Stepping Out to Cure Scleroderma offers a unique

*We saved you a seat!

*Albany, NY June 1 2014 Crossgates Mall, Albany, NY

Binghamton, NY June 1, 2014 Otsiningo Park, Binghamton, NY

Buffalo, NY June 21, 2014 Eastern Hills Mall, Williamsville, NY

Hartford, CT June 14, 2014 Blue Back Square, West Hartford, CT

Long Island, NY June 1, 2014 Wantagh Park, Wantagh, NY

Manhattan, NY June 15, 2014 Riverside Park @ 96th St, New York, NY

Plattsburgh, NY June 8, 2014 Beekmantown Town Hall, Beekmantown, NY

Poughkeepsie, NY June 21, 2014 Vassar College, Poughkeepsie, NY

Ridgefield Park, NJ June 8, 2014 Overpeck Park, Ridgefield Park, NJ

Rochester, NY June 7, 2014 Seneca Park, Rochester, NY

Stamford, CT June 29, 2014 Westhill High School, Stamford CT

Syracuse, NY June 8, 2014 Onondaga Lake Park, Liverpool, NY

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Please collect donations.

This is our primary fundraiser.

Checks payable to SF Tri-State

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.

Unable to attend my contribution $ __________________ I am interested in volunteering for Walk 2015. I would like more information about scleroderma. I am a scleroderma patient. Please add me to your mailing list.

Team Name ______________________________________

I am walking in honor of _____________________________ In memory of ___________________________________________

Registration Fee(s) $ __________________________ Personal donation $ _______________________

Walk Site: Albany Binghamton Buffalo Hartford Long Island Manhattan Plattsburgh Poughkeepsie Ridgefield Park (NJ) Rochester Stamford Syracuse

THIS IS OUR PRIMARY FUNDRAISER. PLEASE COLLECT DONATIONS.

Last Name _______________________________ First Name(s) __________________________________________________

Address _______________________________Apt ________ City _______________________ St _______ Zip ______________

Primary Phone ____________________________ Email _________________________________________________________

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, affiliate, support group, officer, employee, sponsor, organizer, volunteer, municipality 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: _________________________________________

WAIVER: Must Be Signed

A signature is required for each adult (18 and over) in the waiver section below. Parents must sign for all children.

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Please collect donations.

This is our primary fundraiser.

Checks payable to SF Tri-State

Total Donations $ ___________

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.

List Solicited Donations Below

Unable to attend my contribution $ __________________ I am interested in volunteering for Walk 2015. I would like more information about scleroderma. I am a scleroderma patient. Please add me to your mailing list.

Team Name ______________________________________

I am walking in honor of _____________________________ In memory of ___________________________________________

Registration Fee(s) $ __________________________ Personal donation $ _______________________

Walk Site: Albany Binghamton Buffalo Hartford Long Island Manhattan Plattsburgh Poughkeepsie Ridgefield Park (NJ) Rochester Stamford Syracuse

THIS IS OUR PRIMARY FUNDRAISER. PLEASE COLLECT DONATIONS.

Last Name _______________________________ First Name(s) __________________________________________________

Address _______________________________Apt ________ City _______________________ St _______ Zip ______________

Primary Phone ____________________________ Email _________________________________________________________

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, affiliate, support group, officer, employee, sponsor, organizer, volunteer, municipality 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: _________________________________________

WAIVER: Must Be Signed

Free gift with $250 raised (one gift per registrant/family)

A signature is required for each adult (18 and over) in the waiver section below. Parents must sign for all children.

Walk day registration fee: Ages 16 and up - $25 | Ages 5 -15 - $5 | Ages under 5 - FreeOnline \ Pre-walk mailed in registration fee: Ages 16 and up - $20 | Ages 5-15 - $5 | Ages under 5 - Free

Please turn in additional DONATIONS at the check-in/registration table on the day of the walk.

R C T GOfficial Use Only

Name Address City St Zip Donation

Walk Registration Form

STEPPING OUT TO CURE SCLERODERMA 2014For more information or to register please visit http://Walks.SclerodermaTriState.org

Non-Profit OrganizationUS Postage

PAIDBinghamton, NY

Permit No. 21

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59 Front StreetBinghamton, NY 13905

Tri-State, Inc. Chapter

Make a Donation. Make a Difference. Donation of $25.00 or more includes membership in both the Tri-State Chapter &

the Scleroderma Foundation

Name __________________________________________________________________

Email (save postage) ______________________________________________________

Address ________________________________________ City ___________________

State ______________________________ Zip ______ Phone ___________________

Amount__________________

Checks payable to SF Tri-State | Donate online www.SclerodermaTriState.org (email required)

Credit Card (all information required)

qVisa qMaster Card qAmerican Express qDiscover

Card Number _________________________________Security Code _____________

Expiration Date ___________________ E-mail _______________________________

Contribution is made: qIn honor of qIn memory of qDues qDonation (No Membership)

Name _________________________________________________________________

Send a note to: Honoree / Family

Name _________________________________________________________________

Address _________________________________________________________________

City _________________________________ State _______ Zip __________________

Email (save postage) _______________________________________________________

Mail to: Scleroderma Foundation/Tri-State, Inc. Chapter

59 Front Street, Binghamton, NY 13905

Have you moved? Changed your phone number or address? Keep our records up-to-date by contacting us with your new information:

sdtristate@scleroderma.org or (800) 867-0885.

Want to turn your 5K run, milestone birthday or other event into a fundraiser?

No longer want to receive our newsletter? Or receive it by email only? Please call 800-867-0885 to help us Go Green!

The Scleroderma Foundation in no way endorses any of the drugs or treatments in this newsletter; the information is provided to keep readers informed. Because the manifestations and severity of scleroderma vary, individualized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) to assure proper evaluation and treatment.

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www.SclerodermaVideo.com

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http://twitter.com/sclerodermaTS

www.flickr.com/sftristate

www.inspire.com

Though the use of our online fundrasing software HopeRaiser, raising money for the Tri-State Chapter has gotten easier. Hoperaiser makes

it simple for you to set up a donation page, manage your contacts, and track donations. The contributions are sent directly to Tri-State, and donation acknowledgements are automatic. You can make a difference without a lot of fuss.

For more information on how to start your HopeRaiser today, please visit scleroderma.org and click on “Get Involved”.