"Boscoe Asks"..."Do You or Someone You Know in the Northeast Have "Charcot Marie Tooth" or "CMT"?

I've been blogging now for approximately 6 months, and on one occasion I referenced the debilitating disease I have and how it affects my daily activities (See Here) without going into detail or identifying the disease itself.  Charcot Marie Tooth Disease (CMT), also known as hereditary motor sensory neuropathy or peroneal muscular atrophy is the most commonly inherited, and misdiagnosed form of peripheral neuropathy. It is a disease of the nerves that control muscles (unlike Muscular Dystrophy) and slowly and progressively it causes loss of normal function and or sensation in the lower legs, feet, hands and arms. This disease, which affects over 2.6 million people worldwide, announced it's presence in me 8 years ago, and has steadily made it's "mark" with time. I joined the Charcot Marie Tooth Association (CMTA) a year ago in order to receive their current newsletters and stay up to date with current research and development activities. A couple of months ago, after thoroughly reading one of their newsletters, I realized that the association had chapters in various parts of the country and scattered across the globe, but none here in the Northeast.  LONG story short............after contacting the CMTA and bonding with a member of the Board of Directors  I was appointed New England Support Group Leader for the CMTA. My first assignment (mission) was to find a home for our chapter, and after a long and exhaustive search the proprietors of Harvard Medical and Beth Israel Deaconess Medical Center were gracious enough to fulfill that request.  In our new home, the first meeting will take place on Saturday, September 27, 2008 at Beth Israel Deaconess Medical Center from 1:00 - 3:00 P.M.  The meeting specifics, as regards location, time, etc., are as follows:

Location:

 

New England Charcot Marie Tooth Association

Saturday, September, 27, 2008

Beth Israel Deaconess Medical Center - East Campus

Kierstein Living Room - Kierstein Building - First Floor

330 Brookline Avenue

Boston, MA 02215

Telephone (617) 667-7000

Time: 1:00 - 3:00 P.M.

Itinerary: To Be Announced

Contact:    Mark Boxshus

Email: MarkB_CMTANE@mac.com

      Pat@charcot-marie-tooth.org

So my fellow bloggers, today my posting has a different flavor, but one I am sure that will be of interest to other bloggers who either have this malady or know of someone who does. Our itinerary is not yet set in stone, but will be published in the very near future.  Feel free to contact me or Pat@charcot-marie-tooth.org for further details and directions. AND.......as always stay tuned...........I've been cooking up a storm and have some yummy recipes to share!

Your Fellow Blogger..........Mark