CATEGORIES: CMT Summit

CMT Kids Video

by Courtney | Sep 19, 2016 | 0 comments

CMT Kids Video

*Calling all parents and caregivers of children with CMT*

The Hereditary Neuropathy Foundation is currently seeking 10 second video clips of CMT patients under the age of 16, performing daily activities. We are preparing to present visuals to industry leaders showing ways in which CMT affects daily living. With this compilation we hope to gain further attention and funding for medical and alternative therapy. Please reference our guidelines below before submitting to ensure we produce the highest quality presentation possible.

Video Submission Guidelines:

Please hold phone or camera horizontally
Please limit your video to 10 seconds
Please ensure sufficient light (daylight shows best) and minimal camera movements.

Please submit your video to [email protected]

Title subject line: CMT Kids Video

Thank you for sharing your stories and shining another spotlight on our mission for research and treatment!

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We Care About Research for Hereditary Neuropathy with Liability to Pressure Palsies (HNPP)!

by Courtney | Sep 27, 2017 | CMT Summit, Faces of CMT - HNPP Fund | 11 Comments

HNPP is the second most common form of CMT/IN and may affect approximately 15,000 in the USA. Help us find a cure today!

Hereditary Neuropathy Foundation Announces Patient-Centered CMT/HNPP Pain Summit

by Courtney | Sep 26, 2017 | CMT Summit, CMT Type - HNPP, Faces of CMT - HNPP Fund | 2 Comments

HNF is proud to announce that our annual CMT Summit will include the HNPP community Friday, November 3, 2017, in Cambridge, Massachusetts.

Summit Panelist Spotlight: Caregiver Kerin Reilly

by Courtney | Sep 30, 2016 | Caregivers, CMT Summit | 0 Comments

HNF has invited Kerin Reilly, who sits on our Board of Directors, to join us on the panel discussion “The Fearless Caregiver: The Caregiver’s Voice Matters and the Role of the Caregiver in Patient-Driven Research.”

Summit Panelist Spotlight: Mitchell Warner

by Courtney | Aug 30, 2016 | CMT Summit | 1 Comment

Bracing is used in the management Charcot-Marie-Tooth to support and hold a part of the body compromised by muscle weakness, muscular atrophy, sensory impairment. Bracing is also used to help correct skeletal deformity.

Summit Panelist Spotlight: Renée Arnold

by Courtney | Aug 29, 2016 | CMT Summit | 0 Comments

Dr. Arnold is currently President & CEO, Arnold Consultancy & Technology LLC, eadquartered in New York City, and Practice Lead, HEOR, Quorum Consulting, Inc., based in San Francisco, CA

Summit Panelist Spotlight: Brent Baker

by Courtney | Aug 29, 2016 | CMT Summit | 0 Comments

With respect to CMT, Dr. Baker’s team has collaborated with Drs. Michael Sereda and Klaus Nave of the Max Planck Institute for Experimental Medicine (MPI) to utilize their CMT1A transgenic rat and established the initial CMT1A rat colony in the United States.

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