funding and awareness for CMT

[Guest guest]

Sandeep,

Funding for CMT research is extremely low because other diseases/disorders are

considered " life threatening " - there is a greater incentive for medical

researchers to work on these. (yes, we have been over CMT as " life threatening "

several times, check the archives for the past 6 years)

The MDA funds research for 40 neuromuscular diseases, including CMT. But the

next three year funding cycle has only 2 million in research dollars for CMT.

(This is out of a 21 million dollar budget!) Individuals are always allowed to

make donations to MDA FOR CMT research too.

Some CMT organizations try to raise $ from their own members. A good idea, but

many are not able to contribute. If someone is receiving SSDI or even SSI,

making a monthly budget stretch on that is difficult; then making a donation on

top of that is impossible.

The Neuropathy Organization funded part of the NT-3 Research, and they have also

taken Peripheral Neuropathy to Capitol Hill for greater Government

appropriations and the dedication of next May as Peripheral Neuropathy month

which coincides with their conference.

Fundraising events are great - but not enough. Now is the time for Biotech to

meet CMT, face to face with a greater interraction and partnership.

You said " alot needs to be done in this direction " - referring to CMT Awareness.

There are a number of us who have been doing exactly this for 6 years, some even

more. And yes, I agree more needs to be done.

So what are YOUR plans for raising CMT awareness? Remembering CMT is worldwide

can you outline 10 awareness and 10 fundraising ideas? I would appreciate this.

Gretchen