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(BINGHAMTON, NY) The Scleroderma Foundation / Tri-State, Inc. Chapter will be holding its 10th annual Long Island Stepping Out to Cure Scleroderma walk at Wantagh Park in Wantagh, N.Y. on Sunday, June 2, 2012. Registration and check-in start at 9 a.m. and the walk begins at 10:30 a.m.
Join Long Island walk leaders, Barbara Geller, Denise Gesuale, and Dawn Selg, along with patients, families and friends as they gather for an encouraging event that honors scleroderma survivors and lifts the spirits of those who support them. Food, raffles, entertainment and an ideal setting make this an outstanding experience.
What is it like living with scleroderma? This video takes a look at some of the struggles that patients face when dealing with this life altering autoimmune disease. The video features actor, Jason Alexander; Football Hall of Famer, Barry Sanders; Actor and Comedian, Mark Teich; Author and Personality, Mitch Albom, and scleroderma patients… sharing their stories on how scleroderma has deeply affected their lives. For more information or to order a copy of this video (or PSA), contact the Scleroderma Foundation Tri-State Chapter.
Participants can register to walk or sponsor a walker online at http://walks.SclerodermaTriState.org before the event. The registration fee is $20 for participants 16 years and older, $5 for children ages 5 to 15, and children under 5 years are free. Registration forms and donations can also be mailed to the Tri-State office to complete your event registration. Day of event registration is $25 for participants 16 years and older; and $5 for children ages 5 to 15; children younger than 5 are free. All pre-registered participants receive a T-shirt.
Awards are given to the individual and team that raise the most money.
The Wantagh Park walk helps build awareness and raise funds for contending with this devastating disease.
The walk is part of a larger national drive to spread the word about scleroderma throughout the month of June. Efforts include the Stepping Out to Cure Scleroderma walks a at numerous locations across the United States; development of a new scleroderma awareness month Website, www.sclerodermaawareness.org, that provides tools to help supporters take action; and an hourly presentation of a provides tools to help supporters take action; and an hourly presentation of a PSA on the CBS Digital Billboard on 42 Street in New York City.
For more than 20 years, the Scleroderma Foundation, its Chapters and Support Groups have recognized June as Scleroderma Awareness Month, marking it with annual awareness and fundraising events, as well as obtaining presidential, state and local proclamations. The Scleroderma Foundation has joined the Federation of European Scleroderma Associations (FESCA), and other international scleroderma organizations in recognizing June 29 as World Scleroderma Awareness Day.
Tri-State Executive Director Jay Peak notes that, “The Tri-State Chapter has been supporting patients and advocating for resources to help find a cure for more than 30 years. Working with local patients, caregivers and volunteers, we are slowly making known this rare and difficult disease.”
For more information on scleroderma and the Scleroderma Foundation / Tri-State, Inc. Chapter, call (800) 867-0885 or visit www.SclerodermaTriState.org. You can also find us on Facebook and YouTube.
Stepping Out to Cure Scleroderma is sponsored in part by Diamond Sponsor, Bethpage Federal Credit Union; National Gold Sponsor, Actelion Pharmaceuticals; and gold sponsors Crane Foundation, Helen Polenz and AriZona Beverage Co.
Scleroderma [sklair-uh-DERM-uh] is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body. With no known cause, scleroderma is a painful, life altering disease that can be fatal. It can cause a thickening and tightening of the skin. In some cases, it causes serious damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract. As scarring, or sclerosis of these organs and organ systems progress, they work less effectively and can lead to organ failure and death. Some medications and treatments can help with certain symptoms, but there is no known cure for scleroderma. The disease affects about 300,000 people across the U.S. In comparison, approximately the same numbers of people are affected by multiple sclerosis. There are an estimated 30,000 cases of scleroderma in Tri-State Chapter’s New York, New Jersey and Connecticut service area.
About the Scleroderma Foundation / Tri-State Inc., Chapter
The Scleroderma Foundation/Tri-State Inc., Chapter is a 501(c)(3) non-profit organization serving New York, northern New Jersey and Connecticut. The organization helps scleroderma patients and their families cope with the disease through support group programs, educational forums, physician referrals and educational information such as articles, books and DVDs, available through our lending library and a growing number of videos online at www.sclerodermavideo.com. The chapter has a three-fold mission which is to promote the welfare of individuals and families affected by scleroderma, increase public awareness and support scleroderma research. More about the work and mission of the Tri-State Chapter can be found at www.SclerodermaTriState.org and keep up-to-date on events and other happenings on Facebook (www.facebook.com/SFTriState) and on Twitter (@sclerodermaTS).
About the Scleroderma Foundation
The Scleroderma Foundation is the national organization for people with scleroderma, their families and friends. It was formed Jan. 1, 1998, by a merger between the United Scleroderma Foundation and the Scleroderma Federation. Today, the Scleroderma Foundation is headquartered in Danvers, Mass. It is a 501(c)(3) non-profit organization dedicated to serving the interests of people living with scleroderma. The Foundation has a network of 24 chapters and 150 support groups committed to carrying out the three-fold mission of support, education and research. The Scleroderma Foundation funds on average of $1 million in new grants each year to find the cause and cure for scleroderma.
For more information about the Scleroderma Foundation, visit www.scleroderma.org or call (800) 722-HOPE (4673).