Scleroderma

Dedicated to serving the needs of those whose lives have been impacted by scleroderma through its three-fold mission of support, education and research, the Scleroderma Foundation is proud to announce June as "Scleroderma Awareness Month."  During June Scleroderma Awareness Month, the Foundation focuses on efforts to advance awareness about scleroderma to a variety of audiences on local and national levels, including medical professionals, caregivers, and the many patients and their family members who battle this severe, yet largely unknown, autoimmune disease each and every day.

Throughout the month of June, the Foundation's national network of 22 chapters and 145 support groups will host a variety of events to both generate awareness and to raise funds to support the work and mission of the Foundation.  The Foundation's signature event, "Stepping Out to Cure Scleroderma" walk-a-thons, will be held in more than 44 communities across the country with an estimated 12,000 participants.

Scleroderma is a progressive autoimmune disease – like rheumatoid arthritis, lupus, and multiple sclerosis – in which the body's immune system attacks its own tissues, causing the over-production of collagen (the primary component of scar tissue) in the body.  This excess collagen takes over healthy cells in the body's organ systems causing scarring (sclerosis) of the skin and often the internal organs, most commonly the heart, lungs, kidneys and gastrointestinal tract.  Scleroderma primarily affects women, but men and children also suffer from the disease.  

"The National Institutes of Health reported that incidences of autoimmune disease, which includes scleroderma, are steadily on the rise," notes Robert Riggs, Scleroderma Foundation chief executive officer. "It is therefore important that we continue to foster greater awareness about scleroderma and those who are affected by this debilitating disease."

Scleroderma patient and advocate, Pat Gould has lived with scleroderma for eight years and knows firsthand what it is like to face the physical, emotional, and psychological effects of the disease.  Yet thanks to continued awareness and educational initiatives spearheaded by the Scleroderma Foundation, Pat, and other patients like her, has learned how to cope with the seemingly insurmountable challenges brought on by the disease.  "Coping with a devastating, and sometimes life-threatening disease can be overwhelming.  It's even more difficult when the disease, like scleroderma, is largely unknown and little understood," says Gould. "The first step towards battling scleroderma begins with making everyone aware of, and informed about, the realities of the disease and the many complications faced by those who are affected by it. Knowledge empowers us all and gives us the ability to fight for our health and the freedom to hope for a cure."  

With some 300,000 people, like Pat, living with scleroderma in the U.S., the need could not be greater for increased funding for scleroderma research. In 2010, the National Institutes of Health (NIH) estimates that it will award $22 million for scleroderma-related research.  The NIH has also allocated $3 million to date for scleroderma research from a $10 billion special appropriation it received as part of the "American Recovery and Reinvestment Act." Additionally, Congress has designated scleroderma as a condition eligible for funding under the Department of Defense's $50 million Peer Reviewed Medical Research Program in 2010.

The Scleroderma Foundation is proud to be the leading nonprofit organization funding scleroderma-related research through a peer-review process modeled after the guidelines set forth by the National Institutes of Health. Each year, the Foundation makes available at least $1 million to researchers working to find new and better treatments and a cure.

Source: Yahoo! News