CMT included in the Labor HHS Appropriations Bill this week

[Guest guest]

The U.S. House of Representatives included the following language in the Labor,

HHS Appropriations Bill:

Charcot-Marie-Tooth (CMT).-The Committee commends NINDS for its recent

efforts to advance understanding and development of therapies for CMT

and related neurodegenerative diseases. NIH has undertaken an

innovative partnership with a voluntary health association involving

high throughput screens to identify candidate treatments that will

quickly be brought to clinical trials. The Committee supports this

effort and believes that such translational research has the greatest

potential to rapidly develop therapies for patients with CMT and other

degenerative disorders. The Committee encourages NINDS to develop

innovative communications mechanisms to ensure that information on

treatments can be shared in an accurate and timely manner with

practitioners and patients.

Translation....Congress is commending the NIH for its partnership with

the CMTA and is encouraging a collaborative national outreach campaign

be put in place.

Last, but certainly not least, the U.S. Senate included $1 million in

the Labor, HHS Appropriations Bill for the creation and development of

a National CMT Resource Center. The CMTA has been working with several members

of the US Senate for the past 6 months and Executive Director Dave Hall remarked

" I'm happy to report they have shown an incredible commitment to the CMTA and

the national CMT community.

If you have a free minute, please ask your members to drop a quick

email to Senators Arlen Specter (PA) and Judd Gregg (NH) thanking them

for their support of the National CMT Resource Center....in this case,

a thank you will go a long way.