SCLERODERMA EXCHANGE Volume 2, 2013 www.SclerodermaTriState.org
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Published by Scleroderma Foundation/Tri-State, Inc. Chapter Binghamton, New York
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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
New Support Groups! Natalie Puccio has been a longtime volunteer for our Chapter. She has been involved in our Ridgefield Park Walk, volunteered to coordinate fundraisers and helped out at our educational forums while taking care of herself and her four year old daughter Sofia. Nevertheless, she still wanted to do more and so, the Bergen County, NJ support group was born. Natalie brought in Wanda Reynolds as assistant leader and after two meetings, the ladies feel good about filling a need in their community! Meanwhile, the chapter was discussing a new idea with a leader of the former Hackensack Support Group. The idea of a “virtual” support group started the wheels turning for Mary Beth, Director of Patient Education and Support, and Jan Nitti Gnall, and a new method of support began April 16 called Tri-State Connect. Tri-State Connect is a conference call that anyone can join. By calling in at the appointed time, attendees will be introduced to a guest speaker who will join the call for a half hour. They will take questions and listen to concerns. The benefits for attendees might be more support between other meetings in their area or to access for those who are isolated or unable to travel. Meetings are scheduled for once a month on the third Tuesday. Recordings of previous meetings will be available on the Scleroderma Tri-State Chapter Resource page. For additional information visit Connect.SclerodermaTriState.org. We are very grateful for the efforts of Jan, Wanda and Natalie as they lead our outreach to serve those in our region! And thank you to all our support group volunteer leaders as well – we appreciate all you do!
Look for updates on our new support groups and to welcome new group leaders in the fall issue of the Scleroderma Exchange!
The Times Square billboard. Available to be seen from April 1- June 30, 2013
Scleroderma in Times Square One of the key functions of the Tri-State Chapter is to inform people who don’t know about scleroderma. This spring, we have a chance to do that in one of the most populated areas in the world: Times Square. Through a special program that gives us the use of a digital billboard on 42nd street, we are sharing our message that “if you have scleroderma, you are not alone.” The towering 26 feet x 20 feet (520 square foot) CBS billboard plays a 15 second video to the millions who pass through Times Square. A crowd that includes those attending some of NYC’s largest spring events such as the Tribeca Film Festival and AIDS Walk NY. The billboard is located under the CBS logo above Cold Stone Creamery at 253 W. 42nd Street. The 15 second spot is scheduled to run once an hour starting April 1 through June 30, 2013. Our advertisement puts a face on scleroderma. It shows that the disease affects common, everyday people as well as those in the public eye such as NFL Hall of Famer Barry Sanders and actor Mark Teich. More of their stories and battles with scleroderma can be found in a 10 minute video produced last year that speaks from the patient’s perspective. The video is available on the Tri-State Chapter’s YouTube channel (sftristate). The video and the advertisement are also available to TriState members to share with their communities, local broadcasting stations or those close to you to raise awareness for scleroderma. Call us for details at 800-867-0885. Our hope is that the digital spot will allow people to find the Scleroderma Foundation and take advantage of the resources and help we offer. We want those who have scleroderma, their families, and loved ones to know that they are not alone.
2013 National Patient Education Conference Atlanta, GA July 26th - 28th Visit www.scleroderma.org/conference