Scleroderma Community Gathers for Unique Conference Event in Atlanta
Life-Changing Opportunity for Individuals with Rare Autoimmune Condition
DANVERS, Mass., July 22, 2013 /PRNewswire-USNewswire/ — More than 500 people are expected in Atlanta Friday, July 26, through Sunday, July 28, for the Scleroderma Foundation’s 15th Annual National Patient Education Conference. Patients, family members, caregivers, doctors and other health care professionals from the United States, Mexico, Canada, Europe and Australia will meet at the Hyatt Regency Atlanta for this unique educational experience that focuses on scleroderma, a rare, and sometimes fatal, autoimmune disease. This is the largest gathering of its kind in the U.S. for patients, family members and caregivers to learn more about the disease.
For many of the conference attendees, this is the first time in which they will meet someone else living with the disease. It can be an eye-opening and life-changing event. “This year’s conference will provide an excellent opportunity for people living with scleroderma, their family members and caregivers to access vital information about the disease,” said Robert J. Riggs, the Foundation’s CEO. “We will offer more than 60 workshops this year, many led by the scleroderma community’s leading experts. This is a once-in-a-lifetime opportunity for many people.”
The conference features a variety of workshops and panel discussions led by scleroderma researchers and medical professionals. Seth Ginsberg, a nationally-renowned patient advocate, who is also the co-founder and president of Creaky Joints, an arthritis advocacy organization, will present this year’s opening keynote. Ginsberg will discuss the power of communication in today’s technology-driven world, and how patients can become successful advocates for their own health care needs. Linda McNamara, RN, MBA, and Karen Kemper, MSPH, Ph.D., will present the conference’s closing keynote address. The duo authored, “If You Have to Wear an Ugly Dress, Learn to Accessorize: Guidance, Inspiration, and Hope for Women with Lupus, Scleroderma, and Other Autoimmune Illnesses,” a popular book that offers their insight about how to cope with the challenges of having a chronic illness.
Other highlights of the weekend include:
- More than 60 patient-focused workshops, seminars and panel discussions
- Continuing Medical Education/Continuing Nurse Education (CME/CNE) course offered for health care professionals about Lung Involvement in Scleroderma
- A panel discussion about advances in scleroderma research with questions submitted by members of the Scleroderma Foundation’s online communities
- Awards banquet to honor volunteers, support group leaders, physicians and fundraisers for their work to help the scleroderma community and promote awareness
- A special track just for juvenile patients and their siblings
Forty-three patients will attend the conference on scholarship thanks to the generous contribution of donors. The Conference Scholarship Fund helps send individuals to the educational event, who are first-time attendees or who otherwise would not be able to attend due to financial hardship. For mom Bonnie Cogswell, and her daughter Cheyenne, who has scleroderma, a conference scholarship is a dream come true. In an email to the Foundation, Bonnie wrote, “I just informed Cheyenne of the news, and she did her ‘happy dance,’ which I haven’t seen her do in a long time. You truly are an angel, and we thank you for the answered prayers.”
For more information about scleroderma and the National Patient Education Conference, visit www.scleroderma.org/conference.
Scleroderma is a chronic, often progressive, autoimmune disease in which the immune system attacks one’s body.
Scleroderma means “hard skin.” 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 cure for scleroderma. The disease affects about 300,000 people across the U.S. In comparison, approximately the same number of people are affected by multiple sclerosis.
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.
The Scleroderma Foundation is headquartered in the metro Boston area 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 is the largest non-profit funder of peer-reviewed medical research, making available at least $1 million per year in new research grants to find the cause, better treatments, and a cure for scleroderma.
For more information about the Scleroderma Foundation, visit www.scleroderma.org or call (800) 722-HOPE (4673). You also can find the Foundation on Facebook (www.facebook.com/sclerodermaus) and Twitter (@scleroderma).
SOURCE Scleroderma Foundation