The letter below was sent to Dr. Francis Collins (NIH) and Dr. James Madara (AMA) from Steve Guttenberg, actor and LE&RN Honorary Board Member. Guttenberg's mother lives with lymphedema.
Dear Dr. Collins and Dr.Madara,
I am writing you as my Mother has lymphedema for over ten years, a heart-wrenching disease which has affected her left arm. It’s swollen with toxins that need to be drained every day on a Tactile machine, for over an hour and a half. My mother had a mastectomy, and from the lymph nodes being removed, she now has lymphedema, with three times a week treatment with a board-certified physical therapist. It’s a very hard road for my mother. And for millions of others.
Last week, the U.S. House of Representatives voted on the FY2022 appropriations bill. There was a dramatic edit to the bill, supported by Committee Chair Rep. Rosa DeLauro and Committee Member Rep. Tom Cole. Rather than “encouraging” NIH to establish a National Commission on Lymphatic Diseases, the language now “directs” NIH to do so. Likewise, the bill “directs” NIH to report on LE research within 30 days (rather than 60) and “directs” it to create a research category for lymphedema.
Please support this bill and funding for the research and added services for LE&RN and the work to treat and eradicate lymphedema .