a bit of advocacy for CMT treatment

[Guest guest]

A little side note/good news: I was so happy to see this paper in IDrugs

calling for treatments for CMT persons, that I had to email Dr. .

I did that this morning. This afternoon, he wrote back (!) and thanked

me for my comments and is forwarding them on to his colleagues... - just

a bit of Friday good news for CMT treatment advocacy!

This was the text of my letter:

Dear Dr. ,

>

> I am writing on behalf of and CMTWORLD.org I have recently seen

> an abstract of your paper in IDrugs regarding where the focus of

> clinical research should be headed. I was especially pleased to see you

> state this.

>

> With over 4400 or so CMT affected persons using and CMTWORLD.org

> to seek new treatment information about CMT, additional research is

> desperately needed to help CMT affected people NOW. The past 6 months

> has been very interesting in regard to new treatment methodologies -

> last October, with the breaking news and success of the first NT-3 human

> trials for CMT 1A, and now last week, the news about Ascorbic Acid

> treatment for CMT 1A. Research of this nature gives people with CMT

> tremendous HOPE, which is sorely needed.

>

> I am fortunate in that I was diagnosed in 1962 when I was a 10 year old

> child. Fortunately, CMT in me not progressed much at all, and at 51 now,

> I still am very active and have become an advocate for CMT treatment.

>

> On behalf of those of us at and CMTWORLD.org, thank you and your

> colleagues for all you are doing to encourage treatment-generated

> research for CMT.

>

> Sincerely,

> Gretchen Glick

> / and http://cmtworld.org

> the focus of clinical research should continue to be on developing

> pharmaceutical and rehabilitative therapies to reverse nerve

> degeneration and ultimately improve the functioning of people with CMT.