Charcot-Marie-Tooth (CMT) Support Community

The Charcot-Marie-Tooth (CMT) Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

CMT in Nor Cal

By KellyH1 · New reply 1:21 pm
Discussion in How CMT changed my life · 1 reply
Hello is anyone here from Northern California? I live north of Sacramento but would like to meet/talk with people from my area. I would like to attend a support group. Let me know. Thank you ...

Helios, DBS or Phatbraces?

By KellyH1 · New reply 11:40 am
Discussion in Assistive devices and technologies · 6 replies
I am researching new braces and would like input if you have any regarding these bracing systems. Thank you ...

CMT

By bawadry · New reply yesterday at 11:28 am
Journal · 1 reply
hi i,m from syria and have cmt i hope to share all CMTers ...

Social Security Programs for Those with Charcot-Marie-Tooth

By runnergirl1 · New reply yesterday at 9:39 am
Discussion in Kid's corner · 14 replies
Many people think social security benefits are only for the elderly or retired, but social security benefits are also available for people who meet the government’s definition of disability. http://www.help4cmt.com/articles/?id=115 ...

Neuropathy Diagnosis Obstacles Damaging to Patients' Health

By runnergirl1 · Posted May 21, 2013
Discussion in How CMT changed my life · 0 replies
Continued lack of peripheral neuropathy awareness combined with Medicare reimbursement cuts for diagnostic tools are causing major impediments to neuropathy epidemic prevention, patient care, and treatments ...

Carol Liu, Author of Arlene on the Scene Visits Dallas schools!

By runnergirl1 · Posted May 21, 2013
Discussion in HNF news · 0 replies
Carol Liu, author of Arlene on the Scene and Arlene, the Rebel Queen visited schools in Dallas to talk about her books...read the teachers blog about the wonderful day and how much her students learned ...

Helios, DBS or Phatbraces??

By KellyH1 · New reply May 21, 2013
Discussion in Assistive devices and technologies · 1 reply
I need new braces! I have the good ole hard plastic ones but I'd really like the carbon fiber ones. If you have an experience with them let me know. I'm looking at the Dynamic Bracing System and the Phatbraces ...

Bracing for Helios

By runnergirl1 · New reply May 19, 2013
Discussion in HNF news · 18 replies
Lori, who describes herself as “the kind of person who researches everything,” almost couldn’t believe she was on her way to Ortho Rehab Designs...read more http://www.help4cmt.com/articles/?id=181 &pn=bracing-for-helios ...

Five million

By Brian · New reply May 18, 2013
Journal · 205 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Vestibular impairment in patients with Charcot-Marie-Tooth disease

By runnergirl1 · Posted May 17, 2013
Discussion in Medications · 0 replies
http://www.neurology.org/content/early/2 013/05/08/WNL.0b013e318295d72a.abstract ...

May 13 - 17, 2013 is Neuropathy Awareness Week

By runnergirl1 · Posted May 17, 2013
Discussion in Symptoms · 0 replies
For National Neuropathy Awareness Week (May 13-17), The Neuropathy Association and the Hereditary Neuropathy Foundation Call Attention to the Diagnostic Challenges Hurting Millions of Neuropathy Patients ...

Canine Companions for Independence (CCI) has provided trained assistance do

By runnergirl1 · Posted May 13, 2013
Discussion in HNF news · 0 replies
Canine Companions for Independence (CCI) has provided trained assistance dogs for children and adults with disabilities since 1975. The world’s largest assistance dog organization, CCI has placed over ...

HNF-WVU-NIOSH Study update:

By runnergirl1 · Posted May 10, 2013
Discussion in HNF news · 0 replies
We are pleased to update our readers on the progress of the WVU-NIOSH study, “A Bi-Directional Translational Model of Exercise Training in the Treatment of Charcot-Marie-Tooth Disease”, funded by HNF ...

Potential new treatment for CMT

By runnergirl1 · New reply May 8, 2013
Discussion in Medications · 2 replies
A potential new treatment strategy for patients with Charcot-Marie-Tooth disease http://www.sciencecodex.com/hitting_rese t_in_protein_synthesis_restores_myelinat ion-111179 ...

KAFO's

By hugsfromme · New reply May 7, 2013
Discussion in Assistive devices and technologies · 7 replies
I wear afo's but had knee surgery about 8 months ago, can't seem to walk w/o walker, been doing p/t just as long. Was trying to walk with cane and knee that had surgery buckled. P/t is recomending KAFO's ...

Statistics by Country for Charcot-Marie-Tooth Disorder

By runnergirl1 · Posted May 7, 2013
Discussion in Newly diagnosed · 0 replies
http://www.rightdiagnosis.com/c/charcot_ marie_tooth_disorder/stats-country.htm ...

Tendon Transfer surgery for drop foot?

By Burlington · New reply May 6, 2013
Discussion in Assistive devices and technologies · 21 replies
I am 46 and have had what they think may be CMT since I was a child. My CMT doesn't seem to be as progressed as others I've read about and either I am in total denial or it doesn't seem to be progressing ...

A new Inspire report in collaboration with Stanford Medical School

By Brian · New reply May 5, 2013
Journal · 84 replies
As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

curcumin treatment helping anyone?

By hugsfromme · Posted May 4, 2013
Discussion in Medications · 0 replies
Accrding to Quest and online research the spice Curcumin has been helpful in helping some types of CMT. Although it is still in trial stage the supplement used was from Sigma catalog number 7727 contains ...

Pain Relief

By gbarrett (Inactive) · New reply May 2, 2013
Discussion in Medications · 6 replies
I have a concern I'd like to discuss with everyone. I've had several doctors tell me that they are not worried about a drug interaction between Cymbalta and Tramadol, although the literature clearly states ...

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help4CMT: Carol Liu, author of Arlene on the Scene and Arlene, the Rebel Queen shares visits schools in Dallas to talk about her recent book......

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About this community

The Charcot-Marie-Tooth (CMT) Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Hereditary Neuropathy Foundation, an Inspire trusted partner.