[Fredslist] please help my friend's 8-year old niece

[Newthynk at aol.com]

Gotham, my good friend's 8 year old niece could use some Gotham magic.

Her name is Julia and to know her is to fall in love with her. She is an 
incredible source of inspiration: Julia is kind, bright-eyed, incredibly funny, 
and has a wonderful way of being in the world. And she has a type of peripheral 
neuropathy called Charcot-Marie-Tooth (CMT).

CMT results in muscular atrophy and sensory loss in the arms and legs and, in 
Julia’s case, chronic pain. CMT affects Julia in that she has walking 
limitations, suffers from hearing loss in both ears, lives with constant foot pain, 
and wears daytime orthotics and nighttime braces. Despite her situation, Julia 
rarely complains and has an extremely positive outlook on her life. Every day 
Julia and her family – Mom, Dad, and brother Josh - face new challenges with 
their courage, hope and strong determination to support Julia in living a high 
quality of life.

On June 8th, Julia's family, along with the rest of TEAM JULIA ‘08 will be 
participating in the “Swim for the Cure” by each swimming one mile in the 
Chesapeake Bay in order to raise money for the Charcot-Marie-Tooth Association’s 
research fund. Julia also swims and hopes to one day lead the team that bears 
her name!

We would like to ask your help in 1) raising awareness about CMT disorder and 
2). Raising funds to cure CMT (ONLY $10 million dollars away from finding a 
CURE).

If you (or your organization) would like to sponsor “TEAM JULIA ‘08,” please 
go to
<https://secure.charcot-marie-tooth.org/Donate_TeamJulia08.php >
to make your contribution to the CMTA Research Fund. 
You can read more about CMT and the CMT Association by using these links to a 
CMT brochure <
http://www.charcot-marie-tooth.org/download_file2.php?filename=CMTA_Brochure_030408.pdf> as well as the most recent newsletter <
http://www.charcot-marie-tooth.org/newsletter_PDF/2682010208.pdf> . 


Many thanks for your time and consideration.


The CMTA is a non-profit organization whose mission is “To generate the 
resources to find a cure, to create awareness, and to improve the quality of life 
for those affected by Charcot-Marie-Tooth.”  In 2007, the CMTA disbursed close 
to $500,000 to fund ongoing research and awarded a new three-year, 
$100,000/year grant specifically to study CMT Type 2E (Julia’s specific type).  With the 
money paid out in 2007, the CMTA has now funded nearly $2 million in research 
aimed at identifying and understanding the causes and disease processes of 
CMT. With their newly formed Strategy to Accelerate Research (STAR) program, the 
CMTA hopes to raise $10 million in the next three years and truly believes 
that those research dollars are all that is needed to find a cure! Unfortunately,
drug companies have yet to provide major funding for CMT research, so nearly 
all monies raised come from private donations.  This is why we continue to 
need YOUR help to fund research focused on understanding the genetics of CMT, 
finding ways to effectively manage current symptoms, and most importantly, 
continuing to carry out clinical trials so that a cure may soon be available for 
Julia and other people with CMT.

We continue to be amazed by Julia.  Despite her limitations, she is an 
incredibly well-adjusted eight-year-old girl.  She has a lot to deal with – walking 
limitations, hearing loss, constant foot pain, daytime orthotics and nighttime 
braces, yet she rarely complains and has an extremely positive outlook on 
life and her future.  She swims regularly, and hopes to one day be part of the 
team that bears her name! Her brother Josh has been appointed “Executive Director
” of TeamJulia (as we needed to give him an official title!).




Geraldine Newman
Geraldine Newman Communications / NEWTHYNK
212.988.3395

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