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2024 CMT Roadshow Coming to a City Near You?

by | Mar 26, 2024 | 0 comments

Click to Participate

The CMT Biobank is now open! Are we coming to a city near you?

Do you want to make a difference in CMT research? HNF is looking for patients with a confirmed CMT diagnosis to participate in the CMT Biobank. Your vital blood samples and de-identified GRIN data will be shared to develop cell models of all CMT subtypes, as targets for various therapeutic approaches, and for the identification of biomarkers of CMT.

It’s easy. Simply complete the form if you are able to visit one of the following events where samples will be collected by our partner, COMBINEDBrain. There is no cost to participate.

2024 Dates:

April 4th-5th – Orlando, FL

June 7th-8th – San Diego, CA

July 20th-21st – Philadelphia, PA

July 27th-28th – Philadelphia, PA

July 27th-28th – Seattle, WA

September 27th-28th – Atlanta, GA

October 19th – Nashville, TN

December 4th-5th – Los Angeles, CA

Click to Participate

Learn more on this topic

Related Blog Posts

Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

by | May 19, 2014 | | 0 Comments

Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

Hot off the press

by | Feb 28, 2014 | | 0 Comments

It seems like almost weekly there is another new publication on CMT with interesting basic biology. While an earlier “Hot off the press” highlighted the work of Cherry and co-workers at the University of Texas Southwestern Medical Center who showed show that neurons lacking a gene for rab7 result in neuropathy.

New Study on CMT Type 2B

by | Feb 12, 2014 | | 5 Comments

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Grace’s Courage Crusade Brunch 2013

by | Nov 8, 2013 | , | 0 Comments

A bright, crisp day greeted supporters of Grace’s Courage Crusade as they gathered to enjoy brunch by the beach with breathtaking views at the Atlantic Beach Club in Newport, RI. Following the amazing buffet spread, the crowd got intense over a dessert auction that offered tempting sweets and goodies provided by local businesses.

Allison Moore is going to be published!

by | Sep 6, 2013 | , | 0 Comments

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

HNF-WVU-NIOSH Study update:

by | May 9, 2013 | | 0 Comments

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”

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