HNF is excited to announce our first CMT-Connect Workshop webinar on January 12, 2017 from 7:00-9:00pm.
Blog Archive
Blog
January 27, 2017 – Bridge/Brunch Fundraiser
Charity Card Party Brunch and Boutique
Please join us January 27, 2017 at 10:00 at the Broken Sound Country Club, Boca Raton Florida. Join us for an exquisite brunch and card party to benefit the H.E.L.P fund/HNF at Broken Sound Country Club in Boca Raton, FL.
Scavenger Hunt Victor, New York: September 9, 2017
Scavenger hunt September 9th, 2017
Summer Send-Off Celebration, Charlestown, RI: September 23, 2017
All proceeds will go to the Hereditary Neuropathy Foundation to fund research for Charcot-Marie-Tooth Type 2.
Patient-Centered Summit for CMT/HNPP: Cambridge, MA November 3, 2017
HNF is excited to hold the 2nd Annual Patient-Centered Summit with a focus this year on CMT/HNPP and Pain in Cambridge, MA!
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.
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CMT (2)
CMT en Español (1)
CMT Summit (53)
CMT Update (74)
CMT-Connect (29)
CMT-Connect Webinars (10)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (1)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (3)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (6)
Webinars – Genetic Testing (2)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (3)
Webinars – Nutrition (2)
Webinars – Pain (5)
Webinars – Podcasts (2)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (10)
Webinars – School and College (4)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (4)
Emerging Technologies (1)
Faces of CMT (1)
Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
Faces of CMT – Grace (18)
Faces of CMT – HELP Fund (8)
Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (29)
GRIN Patient Registry (39)
HNF Team (10)
Industry (5)
Living with CMT (78)
Media (1)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (22)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (11)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (11)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (7)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podcasts (1)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (31)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (96)
School Outreach Program and Team CMT Kids (1)
Special Events (2)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (29)
TRIAD – Clinical Trial Readiness (5)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
TRIAD – Sponsored Research (0)
Burke Insitute (3)
University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
TRIAD – Therapeutics (4)
Applied Therapeutics (10)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (22)
CMT Type – CMT1B (2)
CMT Type – CMT1X (3)
CMT Type – CMT2A (9)
CMT Type – CMT2C (5)
CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (9)
Upcoming Events (1)
Ways to Give (4)
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