Dear Drs. Collins and Madara:

I write to lend my voice in support of those thousands of men, women and children, including myself, suffering from lymphedema.

My story is simple. I had a wide axillary excision for breast cancer in Sept. 2014. I was proactive about the risk of lymphedema

Dr. Francis Collins and Dr. James Madara,

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

Hello Dr. Francis Collins (NIH),

I am a lymphatics researcher, conducting several clinical studies of cancer-associated lymphedema and reparative microsurgeries. My physician co-PIs are keenly aware of lymphatic dysfunction arising during and after cancer treatment, but sadly, many cancer

Dear Dr. Madara,

In August of 2008, I had symptoms of possible uterine cancer. It was so early in the development of my disease that I was given a choice: wait a few months and test again or have a hysterectomy now. As I was beyond childbearing age and wanting to err on the side of caution,

Dr. Colins and Dr. Madara:

I am writing in regards to the hope that the NIH will establish a National Commission on Lymphatic Diseases as proposed in a FY2022 appropriations bill. I am sharing my story as well because I have lymphedema.

After numerous visits to the doctor to pinpoint the

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

Dear Dr. Collins:

It was with great pleasure that I read that the NIH has been directed to establish a National Commission on Lymphatic Diseases. This is long, long over-due. Those of us who suffer from lymphedema have felt so greatly ignored by the research community.

One year after cancer

"LE&RN and its members have been advocating to unlock the Department of Defense 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. We have made our case that

July 15, 2021

Dr. Francis Collins, Director, National Institutes of Health

Dr. James Madara, CEO and Executive Vice President, American Medical Association

Dear Drs. Collins and Madara:

I write to lend my voice in support of those thousands of men, women, and children, including myself,

December 16, 2020

Dear Dr. Madara,

I want to include you, as the CEO and Executive VP of the American Medical Association, in a troubling, yet all too common, representation of the inadequate lymphedema treatment received by a patient diagnosed following cancer surgery. The patient... me.  Read More >