A big thank you to all of the groups, speakers, and patients who participated in the National Coalition of Autoimmune Patient Groups (NCAPG's Autoimmune Diseases Rally and Health Fair on May 22, 2007 at the Capitol in Washington, D.C.

The day was bright and sunny and there was a good crowd at the rally representing NCAPG member-groups, patients and family members.  Over 40 signs were held up stating, "24 Million Americans with Autoimmune Diseae Need Your Help".  A huge banner was held aloft that listed over 100 autoimmune diseases (AD). 

The rally began with Bob Goldberg of The Myositis Association welcoming those who came to support our cause.  He spoke of the problems that patients are having accessing IVIg therapy and the need to create more awareness of autoimmune disease and its challenges.

Congressman Steve Israel (NY) spoke next. He talked about introducing H. Res. 258, declaring the month of May Autoimmune Diseases Awareness Month (ADAM), why it is so important, the need for awareness and how he was influenced by a patient with Crohn's disease who had met with him and discussed how expensive his treatments were.

Dr. Rose, director of the Johns Hopkins Center for Autoimmune Disease Research, spoke about the root causes of autoimmunity and the need for basic autoimmune research, looking for the common disease pathways, and the importance of identifying markers to aid in the diagnosis of autoimmune disease. He encouraged the members of the NCAPG to continue to work collaboratively for more autoimmune disease research.

Congressman Patrick Kennedy (RI) enthusiastically spoke about the great need for awareness, earlier diagnosis and research into ADs.  He used his own story, telling of his long and difficult road to diagnosis of a tumor in his back. He asked for support for his Prevention, Awareness, and Research of Autoimmune Diseases (PARAiD) Act which he will be re-introducing. The PARAiD act calls to raise awareness and increase research of ADs, particularly those that disproportionately affect women. He also talked about the provisions in the Act which cite the need for professional education and a loan repayment program for much needed physician researchers. 

"Brave" Dave Gearing, an MS patient, spoke of the need for increased autoimmune research and  more affordable health care resources, particularly home health care, mobility devices, and prescriptions for patients.  Dave was diagnosed with MS in his early 20's and is a tireless advocate for persons with chronic autoimmune diseases.

Virginia Ladd from AARDA announced AARDA's new PSA campaign, "Do You Know Your Family AQ?” which speaks to the importance of knowing your family history.  The new campaign stars longtime AARDA spokesperson and autoimmune disease advocate, actress Kellie Martin.

She also called for organizations to work collaboratively for inclusion of language in appropriations which would create a program to standardize antibody testing, which is of significant importance to autoimmune disease patients, both with regard to diagnosing and managing their illnesses. The standardization of testing is also of great importance in clinical trials. Language has been submitted to Appropriations (in the subcommittee on Commerce, Justice, Science, and Related Agencies) which calls for antibody standardization at NIST (National Institute of Standards and Technology).  We all need to work to make sure the language is included. Further information will be forthcoming.

The rally concluded as participants made their way to the Capitol for a Health Fair, where participating groups offered literature about specific autoimmune diseases.