Tag Archives: lupus

Guest Post: LFA’s National Lupus Advocacy Summit

By Sara J. Chang, Government Relations and Public Policy Manager, Lupus Foundation of America.

Lupus“We are lupus activists, and we’re here to tell our stories and make our voices heard throughout Capitol Hill!” That was the empowerment felt during the Lupus Foundation of America’s biennial National Lupus Advocacy Summit held June 24-25, 2013.  It is always an energizing and rewarding event for our lupus activists and 2013 was no exception.  We had meetings with 176 Congressional offices, involving 220 people representing 30 states. Our online activists also came out in force, generating 3,503 emails and phone calls to Congress during the two-day event!

We took to Capitol Hill to urge Congress to support funding the National Institutes of Health (NIH) at $32 billion and to pass H.R. 460, the Patients’ Access to Treatments Act (PATA), to ensure access to treatments for lupus and other chronic conditions.  Lupus activists reinforced their request when they presented more than 30,000 petition signatures collected from individuals calling upon Congress to expand the medical research effort on lupus. (You can still sign the online petition at www.cruelmystery.org.) Continue reading →


Autoimmune Awareness

Throughout March, patient and research advocacy groups are observing Autoimmune Awareness Month. There are an estimated 23.5 million Americans suffering from one of nearly 100 autoimmune diseases. Some autoimmune diseases are rare but more common autoimmune disorders include Type 1 diabetes, Crohn’s disease and lupus.

Autoimmune disease results from the body’s natural defense system attacking healthy cells. The target of this attack can be a specific organ, such as insulin-producing cells in the pancreas in Type 1 diabetes, or it can be more widespread throughout the body, as is the case for patients living with lupus or rheumatoid arthritis. Continue reading →