News & Events

LE&RN supporters write to Dr. Collins and champion a National Commission on Lymphatic Diseases

In July 2021, 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” the National Institutes of Health (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.
This represents amazing progress, but concrete action will happen only if we continue to apply pressure. When LE&RN encouraged supporters to tell their stories and share their demands with the Directors at NIH, those supporters got to work. Those emails and letters are linked below.

We encourage more people who are impacted by lymphatic diseases to tell their stories to Dr. Francis Collins (Director, NIH) and to Dr. James Madara (CEO and Executive Vice President of the AMA). Their email addresses are below. And copy LE&RN on your letter at It will take thousands of emails, but this is a challenge that we must meet.

Letters calling for a National Commission on Lymphatic Diseases

Steve Guttenberg

Dr. Sheri Prentiss (includes response from NIH)

Kristin T.

LW (includes response from NIH)

Bridget B. (includes response from NIH)

Jalina J.


Susan S.

Dr. Melissa B. Aldrich

Dr. Alphonse G. Taghian, M.D., Ph.D., FASTRO; Director, Lymphedema Research Program, Massachusetts General Hospital; and Professor of Radiation Oncology, Harvard Medical School

Cheryl Brunelle, PT, MS, CCS, CLT; Associate Director, Lymphedema Research Program, Massachusetts General Hospital

Lisa McKhann (includes response from NIH)

Marcia R.

A.B., Illinois

The Rev. Judith Taw Beck, BSN, MDiv.