We have two choices in this world. We can sit back and do nothing, allowing this disease to happen, or we can go out and fight to make a difference.
Blog Category
CMT Update
Total posts in Category: 73
Hot off the Press: CMT Update
As we start the new year energized and ready to continue our mission of bringing treatments and...
MightyMan Half Iron Distance Supports HNF
Join HNF at the MightyMan Half Iron Distance in Fort Pond, Montauk, NY October 1st.
Setting Sail For CMT: Manhattan Cruise Successfully Raises Research Funds
HNF cast off for our maiden voyage New York City sunset cruise to raise funds for CMT research.
Amazing Opportunity: AntiGravity Exercise Study in New York City!
Join this exclusive research study for people with CMT featuring the AlterG anti-gravity treadmill.
Natural History Study to Support CMT Research
The National Organization for Rare Diseases has awarded HNF funding to build a robust natural history study to support the second most common type of CMT called hereditary neuropathy pressure palsies (HNPP).
Q&A with Dave Washabaugh: TD Bank Five Boro Bike Tour Team Member
Q&A with Dave Washabaugh
Calling Everyone With CMT/IN
HNF has launched a new Patient-Reported Research Study to advance therapies for CMT and inherited neuropathies (IN) in an effort to collect comprehensive data for a better understanding of the disease.
New Collaboration with the University of North Carolina at Chapel Hill and The Jackson Laboratory Addresses Charcot-MarieTooth/Inherited Neuropathy Mutations Using Gene Therapy
HNF’s initial gene therapy work will focus on CMT type 6, which is caused by a recessive mutation in the C12orf65 gene and is currently no treatment.
Disease Awareness Problem
video of Robert’s keynote about CMT going largely unrecognized
Top 10 Ways to Spread CMT Awareness
HNF HAS COME UP WITH TEN WAYS YOU CAN DO YOUR PART AND HELP ALL OF US SPREAD CHARCOT-MARIE-TOOTH AWARENESS:
Thank You to Everyone Involved with PLEO-CMT Trial!
a drug candidate has reached Phase 3 clinical trial, the critical last phase before potential FDA market approval
Categories
Advocacy (7)
Awareness (31)
Centers of Excellence (12)
CMT Summit (50)
CMT Update (73)
CMT-Connect (29)
CMT-Connect Webinars (9)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (2)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
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 (1)
Webinars – Nutrition (1)
Webinars – Pain (4)
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)
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 (6)
Faces of CMT – Zach (17)
Featured (17)
GRIN Patient Registry (25)
HNF Team (10)
Living with CMT (72)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (1)
Clinical Trials (11)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (6)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (8)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (5)
Nutrition (3)
Occupational Thearpy (2)
Pain (6)
Podiatry (4)
PT and Exercise (24)
Research and Critical Trials (14)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (6)
Registry (7)
Research (77)
School Outreach Program and Team CMT Kids (1)
Special Events (0)
Bike New York (18)
Other Events (3)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (58)
The CMT Genie (3)
TRIAD (21)
TRIAD – Clinical Trial Readiness (0)
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 (2)
Applied Therapeutics (7)
Pharnext (9)
Rarebase (4)
Types of CMT (0)
CMT Type – CMT1A (16)
CMT Type – CMT2A (6)
CMT Type – CMT2C (3)
CMT Type – CMT4A GDAP1 (2)
CMT Type – GAN (4)
CMT Type – HNPP (2)
CMT Type – MTRFR-C12orf65 (4)
CMT Type – SORD Deficiency (5)
Upcoming Events (1)
Ways to Give (3)
Awareness (31)
Centers of Excellence (12)
CMT Summit (50)
CMT Update (73)
CMT-Connect (29)
CMT-Connect Webinars (9)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (2)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
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 (1)
Webinars – Nutrition (1)
Webinars – Pain (4)
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)
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 (6)
Faces of CMT – Zach (17)
Featured (17)
GRIN Patient Registry (25)
HNF Team (10)
Living with CMT (72)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (1)
Clinical Trials (11)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (6)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (8)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (5)
Nutrition (3)
Occupational Thearpy (2)
Pain (6)
Podiatry (4)
PT and Exercise (24)
Research and Critical Trials (14)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (6)
Registry (7)
Research (77)
School Outreach Program and Team CMT Kids (1)
Special Events (0)
Bike New York (18)
Other Events (3)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (58)
The CMT Genie (3)
TRIAD (21)
TRIAD – Clinical Trial Readiness (0)
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 (2)
Applied Therapeutics (7)
Pharnext (9)
Rarebase (4)
Types of CMT (0)
CMT Type – CMT1A (16)
CMT Type – CMT2A (6)
CMT Type – CMT2C (3)
CMT Type – CMT4A GDAP1 (2)
CMT Type – GAN (4)
CMT Type – HNPP (2)
CMT Type – MTRFR-C12orf65 (4)
CMT Type – SORD Deficiency (5)
Upcoming Events (1)
Ways to Give (3)
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