News & Events

Lymphedema & Lymphatic Disease Matters, August 2021

View this email in your browser

August 2021

From William Repicci, President & CEO

There is new urgency when it comes to the fight against lymphatic diseases. Where once we measured success in inches, we now mark milestones. These advancements are fueled by LE&RN activists raising their voices with the institutions that can provide necessary change.
With the proposed NIH Advanced Research Project Agency-Health (APRP-H), there is renewed energy in investments for treatments and cures that bear results in five years that would otherwise take fifty. Significantly, LE&RN was invited to make the case for lymphatic research via a Zoom presentation with NIH Director Dr. Francis Collins.
The National Heart, Blood, and Lung Institute of the National Institutes for Health highlighted Advances and Challenges in Treating Lymphedema in an August interview with Dhruv Singhal, M.D., Director of Lymphatic Surgery at Beth Israel Deaconess Medical Center in Boston—a LE&RN Center of Excellence.
This fall, LE&RN will collaborate with a pharma company and researcher on a drug study to treat lymphedema.
And we await word from the CDC regarding upcoming awards for Chronic Disease Awareness grants, a program for which LE&RN advocated heavily to be included in the FY2021 appropriations bill.
Finally, with both Senator Gillibrand and Senator Feinstein sponsoring the request, we look for a breakthrough in getting lymphatic diseases added to the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).
I congratulate you all on these accomplishments and invite you to enjoy this month’s issue of Lymphedema and Lymphatic Disease Matters.


LE&RN President & CEO William Repicci delivers live testimony to NIH

National Institutes of Health (NIH) Director Dr. Francis Collins invited William Repicci, President & CEO of LE&RN, to present the case for lymphatic research via an August 5 Zoom meeting. This request was made as part of NIH’s examination of how a new Biden administration-proposed research program, the Advanced Research Program Agency – Health (ARPA-H), might best benefit patients. This program could transform the field of lymphatic research with proposed dramatic increases in funding and the goal of finding treatments and cures at warp speed.
Read and watch LE&RN's remarks to NIH

Dr. Dhruv Singhal featured in NIH August newsletter

NIH's National Heart, Lung, and Blood Institute (NHBLI) featured Dhruv Singhal, M.D., Director of Lymphatic Surgery at Beth Israel Deaconess Medical Center in Boston (a LE&RN Center of Excellence), in its August newsletter. The feature was a Q&A with Dr. Singhal entitled "Advances and Challenges in Treating Lymphedema."

This focus on lymphedema by NIH is a positive development, which has certainly been impacted by the voices of LE&RN activists. We thank those activists and congratulate Dr. Singhal on this well-deserved honor.
Read the Q&A with Dr. Singhal

Senators Gillibrand and Feinstein champion LD inclusion in DOD research fund

LE&RN and its members have been advocating to unlock the Department of Defense (DoD) Peer-Reviewed Medical Research Program (PRMRP) so that lymphatic researchers can apply for research funding through this program that dispenses nearly $400 million in grants annually. 

U.S. Senators Kirsten Gillibrand (NY) and Diane Feinstein (CA) (pictured here) have authored a letter making this request to the U.S. Senate Subcommittee on Defense. This progress is a direct result of our community's activism.
Read the letter from Senators Gillibrand and Feinstein

Representatives DeLauro and Cole champion National Lymphatic Commission

In July, there was a dramatic edit to the FY2022 Congressional appropriations bill, supported by Committee Chair Rep. Rosa DeLauro and Committee Member Rep. Tom Cole (both pictured here). Rather than “encouraging” NIH to establish a National Commission on Lymphatic Diseases, it is now directed 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 and demonstrates the power of our advocacy, so we must continue to apply pressure. Please, tell your story and share your demands with the Directors at NIH; their email addresses are below. And copy LE&RN on your letter at You can read other advocates' letters on LE&RN's website. Where NIH has responded, we have included those emails as well.