2018 was a pivotal year for the Hereditary Neuropathy Foundation (HNF) and the entire Charcot-MarieTooth (CMT) Community.
Author Archive
Allison Moore
HNF Announces The First Pediatric Centers of Excellence for CMT
There are those situations in life where you are destined to meet and for me, meeting Dr. Jahannaz Dastgir — “Naz for short” — was one of them.
HNF Joins Inherited Neuropathy Consortium
HNF would like to announce, with great pleasure, that it has been invited to participate in the Inherited Neuropathy Consortium (INC), one of 22 groups under the Rare Diseases Clinical Research Network.
Voice of the Patient Weekend: Expanding the Science of Patient Input in Drug Development and Tapping into Personal Potential
The time for our community to shine is coming as we prepare for the Patient-Focused Drug-Development Meeting on September 28, 2018!
Dr. Lucia Notterpek to Take the Reins as HNF’s New Chief Scientific Officer.
HNF is excited to announce that Dr. Lucia Notterpek will Take the Reins as HNF’s New Chief Scientific Officer.
$200,000 In Donations From True Reply Supports CMT Research
True Reply and HNF have collaborated to enhance patient focused research and knowledge of what matters most to patients living with CMT.
HNF’s Roadmap To Clinical Trial Development
2018 will be “the year” for our community as we prepare for the externally-led Patient-Focused Drug Development Meeting.
TCS NYC Marathon Training Begins
It has been almost one month since my TCS NYC Marathon training has begun, a feat that I am determined to complete.
Hope on the Horizon: CMT & FDA Patient-Focused Drug Development Meeting for Charcot-Marie-Tooth to be Held in 2018
HNF will be holding a landmark externally-led Patient-Focused Drug Development (PFDD) Meeting CMT & INs in Washington, D.C. on September 28, 2018. The meeting will be held in conjunction with September National CMT Awareness Month.
Amazing Opportunity: AntiGravity Exercise Study in New York City!
Join this exclusive research study for people with CMT featuring the AlterG anti-gravity treadmill.
Our Commitment To Charcot-Marie-Tooth Awareness Never Ends
Awareness FBWhile Charcot-Marie-Tooth Awareness Month officially comes to an end today, the Hereditary Neuropathy Foundation’s commitment to spreading CMT awareness carries on every single day of the year.
US Senator Kirsten Gillibrand Recognizes Charcot-Marie-Tooth Awareness Month
Senator Gillibrand has graciously shown her recognition of Charcot-Marie-Tooth Awareness Month by sharing a letter about HNF’s mission, the importance of greater awareness, and the need for increased research and clinical trials
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Awareness (34)
Centers of Excellence (13)
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 (1)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
Webinars – Pain (5)
Webinars – Podcasts (1)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (9)
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 (28)
GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
Living with CMT (78)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (21)
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)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (29)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (95)
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 (28)
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 (3)
Ways to Give (4)
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