CATEGORIES: CMT Update | Team CMT Members

Grab Your Shoes and Spin CRANK Style NYC!

by | Aug 19, 2014 | 0 comments

Dust off those spin shoes and come out to CRANK NYC (Upper East Side – 1658 Third Avenue) Saturday, September 27, 2014 from 1pm to 3pm and Spin-For-A- Cure! Join us as we have fun filled hours of energetic music and fun all for a great cause! 
All proceeds go to research for Charcot-Marie-Tooth. Make sure you check out the raffles for a chance to win some great items. Immediately following we will mingle for food and drinks at Parlor Steakhouse just two short blocks away from CRANK. Don’t live in the New York area? Host a spin in your community to spread awareness for CMT. We will give you all the tools you need. Contact [email protected] for details!Visit http://hnf.donorpages.com/SpinNYC/ to register!

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Double Your Donation

by | Mar 9, 2015 | , | 0 Comments

Corporate matching gift programs are charitable giving programs setup by corporations in which the company matches donations made by employees to eligible nonprofit organizations. For example, if a donor works for Bank of America and donates $100 to the Hereditary Neuropathy Foundation, Bank of America will double the donation by also writing a check for $100.

Taking Matters Into Your Own Hands

by | Mar 9, 2015 | | 0 Comments

Do you have a rare form of CMT?

We were contacted recently from a patient with CMT2D who was looking for advice on how to make a difference. Our recommendations for all people with an ultra-rare form of CMT who want to get involved:

Now GRIN is Accessible in 141 Different Languages!

Now GRIN is Accessible in 141 Different Languages!

by | Mar 9, 2015 | | 4 Comments

The Global Registry for Inherited Neuropathies (GRIN) has implemented Google Translate. Why did we choose Google? Because Google is leading the way in teaching computers how to interpret meaning, avoiding the traditional method of decoding language.

Accelerating Patient Access to Investigational Drugs in 2015

Accelerating Patient Access to Investigational Drugs in 2015

by | Mar 9, 2015 | | 0 Comments

Currently the FDA is working to update the process for physicians applying for accelerated patient access to investigational drugs, while the drug or biological product is being tested in clinical trials. This will also be important for the CMT community as clinical trials for this disease are being launched.

Do You Have Charcot-Marie-Tooth Type 4 (CMT4)? – We Need Your Help

by | Mar 9, 2015 | , | 59 Comments

Autosomal recessive demyelinating CMT4 patients present with earlyonset and slowly progressing symptoms. These include progressive distally accentuated weakness and atrophy of muscles in the lower limbs. In addition, patients may have weakness and atrophy of hands, sensory loss and pes cavus (high-arched feet), and walking difficulties. Further information on CMT4 can be found at Orphanet.

Hot Off the Press – Potential Treatment for CMT1A

by | Mar 9, 2015 | , , | 53 Comments

Two recent publications from Pharnext describe a novel synergistic combination of 3 drugs (baclofen, naltrexone and sorbitol) and its effect on CMT1A both in the lab and in a phase II clinical trial. These 3 drugs already approved but for unrelated conditions, are combined at new optimal lower doses and under a new formulation. This novel potential therapeutic is called PXT-3003.

Support CMT Therapeutic Alliance

by | Mar 9, 2015 | , | 0 Comments

HNF has entered into a joint venture – the CMT Therapeutic Alliance – with a unique non profit organization (BioPontis Alliance for Rare Diseases) that brings professional drug discovery capabilities to translate our research results into potential treatments.

Scientific Advisory Board Meeting

Scientific Advisory Board Meeting

by | Mar 9, 2015 | , | 0 Comments

On the 7th of November we convened our scientific advisory board meeting at the HNF offices in NY. We have written a detailed review that has been published and captures all of the discussion and make this freely available to the scientific community.

Breaking News: First Therapeutic Gene Therapy to Treat an Inherited Neuropathy is Approved for Clinical Trial!

by | Mar 6, 2015 | , , | 9 Comments

The first disease community to receive a therapeutic gene to the spinal cord for an ultra rare inherited neuropathy is Giant Axonal Neuropathy (GAN). Congratulations to Hannah’s Hope Fund (HHF), a 501(c)3 public charity, which has driven this collaborative research in less than six years. Six million dollars has been raised to date to fund pre-clinical and clinical research on this rare disease.

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