Lymphatic Research Foundation: 15 years of hope, inspiration and progress

27 Aug

On Sunday, September 8th at 11 a.m. the Lymphatic Research Foundation (LRF) will host their 2013 Walk for Lymphedema and Lymphatic Diseases.  It will be at Eisenhower Park in East Meadow, NY.  Lymphedema Diary is  one of the sponsors of this worthy event.

Melanie Chaite (right) and me at the 2012 LRF Walk.

Melanie Chaite (right) and me at the 2012 LRF Walk.

LRF was founded the same year that I came down with lymphedema, so I feel a certain kinship with this organization.  It was founded by Wendy Chaite, whose daughter was born with systemic lymphatic disease and lymphedema.  Frustrated by the lack of available medical and scientific answers – to which readers of this blog can surely relate – Wendy quit her successful law practice and founded LRF to promote research of treatments and cures.  Wendy’s daughter, Melanie, is going into her junior year at New York University and was the keynote speaker at last year’s walk.  You can watch a video of her speech here.  It is a must watch and only about 5 minutes.

In the last 15 years, LRF has done more to put lymphedema on the medical radar and to directly sponsor research that could one day unlock the mystery of lymphatic disorders than any other organization of which I am aware.

Among its accomplishments, LRF publishes the international peer-reviewed journal, Lymphatic Research and Biology, awards two-year postdoctoral fellowships to researchers studying at the world’s leading universities, hosts medical symposiums throughout the year that are incredibly informative for doctors, patients and families alike and has created a National Lymphatic Disease and Patient Registry.  Not bad for what started as one Mom working out of her kitchen.

LRF has also (quoting from its website) established “the first-ever Endowed Chair of Lymphatic Research and Medicine at Stanford University School of Medicine, a position currently occupied by Dr. Stanley Rockson.  At the end of 2012, Dr. Rockson was the senior author of a breakthrough study, published in PLoS ONE, that developed a blood test for the early and accurate diagnosis of lymphedema.”

Dr. Stanley Rockson, my rockstar

Dr. Stanley Rockson, my rockstar

I met Dr. Rockson at an LRF dinner during which they honored him for his contributions.  I was starstruck.  Dry mouth and all.  For me, the Beatles, Rolling Stones, and Elvis have nothing on him.

It was important to me to tell Dr. Rockson “thank you.”  “Thank you for committing yourself to lymphatic research,” I said.  “God Bless your amazing mind.  It is helping me and countless others.  I wish you well and I am honored to shake your hand tonight.”  I’m not sure how much of that actually came out, but that’s how I’d like to remember it anyway.

If you can join me and my husband for the walk, I hope you do.  If you can’t, I hope you consider making a general donation.  In the “Send an acknowledgement” field, I would be greatly touched if you would fill in  “Lymphedema Diary” and my email address lymphedemadiary@gmail.com.

An important note for breast cancer survivors: LympheDivas is a fellow sponsor of the walk and a company that I recommend.  Its “medically correct fashion for lymphedema” is available internationally.  The story behind the company is heartbreaking and inspiring.  Read it here.

Hope to see you at the walk or have you join me as a virtual walker.

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