News & Events

NIH is listening, responding, and acting; your stories are powerful

Before I wrote this letter I wrote my suicide note. I now know it’s not a matter of if, it’s a matter of when. I am 33. A single mum. I do not want to die but I cannot continue my ‘life’ like this. I am no longer living, merely existing. I am unable to tell you exactly what is wrong with me despite living this way for the last 15 months—all I can say is I have something wrong with my lymphatic system… – Michele D, United Kingdom

Dear LE&RN Supporters,

 At the end of 2020, LE&RN began asking supporters to send stories to Dr. James Madara, CEO of the American Medical Association (AMA) and to Dr. Francis Collins, Director of the National Institutes of Health (NIH). The response has been overwhelming and dozens of you have taken the time to make a difference. These letters, to the AMA and to the NIH, are available on LE&RN's website.

The AMA remains silent. However, NIH Director Dr. Francis Collins is not only listening, but he is also responding and acting. On August 5, he invited me to present a case for lymphatic research to him and other NIH officials via Zoom. This was part of his research into ways a new Biden administration proposed research program might best benefit patients. That program is called the Advanced Research Program Agency – Health (ARPA-H). It could transform our field with its proposed dramatic increases in research funding and its goal of finding treatments and cures within five years that would otherwise take fifty.
You can see the video of the entire 75-minute meeting on LE&RN's website, as well as read my prepared remarks there.
Finally, I urge you to read Michele D.’s letter in full. Here we again relive the experience of a patient being told she knows more about the lymphatic system than the medical professionals entrusted to diagnose and treat her.
Please continue writing your letters to Dr. Collins who is making strides to address this issue. Also continue to send your letters to the American Medical Association, which we call upon to answer for their silence now that you have informed them of the issues you face. Their emails are below. Please cc LE&RN on your correspondence at



William Repicci, President & CEO of LE&RN