HNF is excited to hold the 2nd Annual Patient-Centered Summit with a focus this year on CMT/HNPP and Pain in Cambridge, MA!
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Rick’s RV Road Trip to Spread Awareness for Charcot-Marie-Tooth
On December 1, 2016, Richard Cole (Rick) will be starting life on the road in an RV–and his road-trip will help spread awareness for Charcot-Marie-Tooth (CMT).
Q&A with CMTRV’er Richard Cole
RVing blog Q&A
Are You a Patient With CMT 1A? New Clinical Trial Opportunity Available For You!
For the first time investigators are looking for patients to participate in a pivotal Phase 3 clinical trial of Pharnext’s lead investigational pleodrug, PXT-3003 for the potential treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A).
#GivingTuesday: November 29, 2016: Time To Give Back This Holiday Season
#GivingTuesday unites countries around the world by sharing our capacity to care for and empower one another, and using the power of social media to amplify the small acts of kindness by organizations, families, and individuals.
Summit Panelist Spotlight: Caregiver Kerin Reilly
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.”
CMT Kids Video
The Hereditary Neuropathy Foundation is currently seeking 10 second video clips of CMT patients under the age of 16, performing daily activities.
Summit Panelist Spotlight: Mitchell Warner
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
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
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.
Summit Panelist Spotlight: Dr. Steven Gray
Dr. Steven J. Gray is an Assistant Professor in the Dept. of Ophthalmology, U. of N. Carolina at Chapel Hill.
Summit Panelist Spotlight: Bernadette Scarduzio
Bernadette Scarduzio – a CMT patient and advocate! I reside in Drexel Hill, PA with my 2 dogs.
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