Southern California to Host Life-Changing Educational Event for Individuals with Mysterious and Disabling Disease
DANVERS, Mass., July 21, 2014 /PRNewswire/ — The Scleroderma Foundation is preparing for 600 people from around the world to attend its National Patient Education Conference later this week in Southern California. This unique educational event will be held at the Anaheim Marriot Friday, July 25, through Sunday, July 27. The conference focuses on scleroderma, a mysterious, and sometimes fatal, autoimmune disease that causes a person’s body to attack itself by creating too much collagen. This is the largest gathering of its kind in the world for individuals to learn more about the disease.
Scleroderma has recently made headlines when movie star and daytime talk show host Queen Latifah announced in an interview to PEOPLE that her mother, Rita Owens, was diagnosed with the condition. The award-winning actress and musician will be presented, along with her mother, with the Foundation’s “Messenger of Hope” award at Saturday evening’s award banquet. The award recognizes and honors members of the scleroderma community who dedicate themselves to spread awareness and education about the disease.
For many of the attendees, the conference will be the first time they will meet someone else living with the disease. It can be a transformative and life-changing event. Catherine Baca, of Sierra Madre, Calif., said she is looking forward to “obtaining the best of information from the scleroderma specialists, researchers, patients and professionals that work every day to improve living better and stronger [with the disease].”
This year’s conference features the largest program the Scleroderma Foundation has assembled to-date, with 79 patient-focused workshops, seminars and panel discussions about every aspect of this complex disease. More than half of the presentations are being offered for the first time. World-renowned scleroderma researchers and medical professionals will be leading sessions. A unique mini-conference just for kids, teens and their family members will be held to address specific issues that can affect this subset of younger patients and their siblings.
Other highlights of the conference include a Continuing Medical Education/Continuing Nurse Education (CME/CNE) course offered for health care professionals about Lung Involvement in Scleroderma. The Foundation also will host its second annual New Investigator Conference to promote collaboration between the newest scleroderma researchers and established scientists from around the country. Fifty-two patients, who are first-time attendees or who otherwise would not be able to attend due to financial hardship, received scholarships to attend this year’s conference, thanks to the generous contribution of donors.
For more information about scleroderma and the National Patient Education Conference, visit www.scleroderma.org/conference.
Scleroderma is a chronic, often progressive, autoimmune disease, which means that the immune system attacks one’s own 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 an estimated 300,000 people in the United States.
About the Scleroderma Foundation
The Scleroderma Foundation is the national organization serving the scleroderma community, including those living with scleroderma, their families and friends, and healthcare professionals working in the field of scleroderma research and treatment. The Foundation was formed Jan. 1, 1998, and is headquartered in Danvers, Mass. It is a 501(c)(3) nonprofit organization with a network of 23 chapters and 150 support groups throughout the United States and Puerto Rico. The Scleroderma Foundation is the largest nonprofit 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