Dear Senator...

I was recently invited by the Fibrous Dysplasia/McCune Albright Syndrome Association to contact my Congressmen as well as those on the Appropriations Committee to encourage economic support of research related to these physical maladies. I must admit, other than a "Friend of the Court" brief I submitted to the Supreme Court in high school, I do not recall participating in this kind of effort.

My mother took the request very seriously. She spent a day and a decent amount of money on postage writing these letters, printing them out and mailing them. Another recipient of the request agreed to write the notes, e-mailed them to my mother and asked that she submit them. There must be an easier way, I thought. And so there was.

When I scrolled down to the bottom of the request, I found links to the websites of each of the relevant Congressmen. These took me to a form in which I could cut and paste my note. (I later took this opportunity to teach my mother how to cut and paste.) Some of the Senators asked me to categorize or tag my note according to a pre-set or fill-in-the-blank set of topics. All in all, it was somewhat enlightening.

This is what I wrote:

FY10 Appropriations for National Institutes of Health & NIDCR

Dear Senator/Representative __________:

I’m writing to thank you for your service to me and your other constituents and to ask for your support and for your recommendation that the NIH expand research on fibrous dysplasia and McCune-Albright syndrome (FD/MAS) within the NIDCR, as well as, through trans-NIH initiatives.

Fibrous Dysplasia/McCune Albright Syndrome is a rare genetic non-inherited syndrome caused by a chance mutation in GNAS coding for the protein Gs alpha. FD/MAS is characterized by fibrous dysplasia (fragile bones), endocrine and other problems and café-au-laits. It’s progressive and has no cure. Practically speaking for bones there is no treatment outside of surgery that in severe cases oftentimes fails.

My nephew, Dylan Levine, was diagnosed with Fibrous Dysplasia at the age of three. He had been suffering with it for years but was too young to communicate with us about the pain he was in. We realized at that young age that he had a break in his bone that was almost impossible to detect. It was the first of many broken bones as this disease spreads within his bones and makes them fragile - they can break due to physical stress or for no apparent reason at all.

At the age of 16, Dylan has had more than 30 major surgeries. Often, he is confined to a full or partial body cast during the period of excruciatingly painful recovery. The last time he had surgery, the metal rod that was prepared to be inserted into his leg to strengthen it was the wrong length, and within a year, the surgeons had to break his leg again and reinsert a new rod. I am told that Dylan is in extreme pain nearly every minute of every day, something that I cannot imagine, and something, which, he somehow hides from me when I see him.

Despite all of this, Dylan has become an incredible wheelchair athlete and an inspiration to able bodied and disabled children and athletes around the world. Still, it saddens me every day to know that he is in a wheelchair, that the disease may spread or get worse at any moment, that he is in ongoing pain and that at any point, he may need to go in for another major operation and recovery. It grieves me further to know that we know so little about this disease - how it came about and what can be done to control or cure it. Because it is such a specific disease, it is not profitable for the private sector to invest in its research. That's why your support is so important.

I seek you help for all children and adults living with FD/MAS. Equity of care and better treatments will only happen with research, symposiums and greater medical awareness and collaboration – and who knows what opportunities and new possibilities for discovery might come about.

Specifically, I ask that you
(1) Increase sustained funding for NIH beginning with a 10 percent increase for FY10 to ensure that the medical research supported by the $10 billion in stimulus aid is as far-reaching and life-changing as possible,
(2) Recognize and thank the scientists, researchers and scholars of NIDCR for their significant work on FD/MAS,
(3) Request that the NIDCR continue and expand their intramural and extramural research on FD/MAS, and
(4) Request that the NIH continue and expand trans-NIH initiatives on FD/MAS. I appreciate so much what you’ve done for FD/MAS in the past, please continue your support and fight for these children and adults.


Should you feel so motivated, I invite you to submit your own letter - feel free to cut and paste as much as you like from my own - to members of the Appropriations Committee and/or your own Senators and Representatives. (I would be happy to provide you with the links.)

I hope you will help.