CATEGORIES: Awareness | CMT Update | Inspire Community

Our CMT Inspire Community, Soon to be 2,000 Strong!

by | Jun 4, 2015 | 1 comment

HNF has partnered with Inspire to provide a safe online health and wellness community in which patients, families, friends, and caregivers connect with one another for support and information. Some of the HOT topics currently being discussed include “Pregnancy and CMT,” “Types of AFOs/Leg Braces,” and, “What You Wish Your Doctor Knew.”

If you have not joined us yet, please take a minute to set up your profile and join our community. Don’t forget to add your picture to make things a bit more personal. For more info on the CMT Inspire Community, please contact [email protected]

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Collaboration is the Key to HNF Success

Collaboration is the Key to HNF Success

by | Dec 4, 2014 | | 0 Comments

We at HNF are so proud of the accomplishments of those scientists we fund and are asking you to please continue to support our efforts. Our Therapeutic Research In Accelerated Discovery (TRIAD) program is a proven collaborative model in the drug discovery process.

Sneak Peak of Fall Newsletter: CMT Research Study Survey

by | Sep 16, 2014 | , | 2 Comments

My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

Building Awareness on CMT and Supporting the Patient Community – HNF Announces Support from Pharnext

by | Aug 19, 2014 | , , | 1 Comment

HNFpharnext recently entered into a partnership with the French biopharmaceutical company, Pharnext, to help raise awareness of Charcot-Marie-Tooth (CMT) disease and support the CMT patient community through several initiatives. Building awareness is key! Pharnext’s support will assist HNF in distributing HNF’s CMT Update quarterly newsletter, enhancing the Global Registry for Inherited Neuropathies (GRIN), setting up activities for CMT September Awareness Month in the US and strengthening the CMT Inspire Community.

In Memoriam

by | Aug 19, 2014 | | 0 Comments

The HNF family has lost two great people this summer: Franklin G. Downing Sr. (father of board member Matthew Downing) and George G. Gatta (father of board member Kathleen Zappola).

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1 Comment

  1. chiefarchitect
    chiefarchitect on June 7, 2015 at 12:36 pm

    I am a 74 year old asian male that has had CMT approximately 8 years now. I was wondering if any other Asians have had similar experiences in the progression of the muscular weakness as well as blurred vision, hearing loss and speech problems. I think this website is a wonderful resource for those who suffer from the desease. Thank you.

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