HNF’s Global Registry for Inherited Neuropathies (GRIN) is one of our initiatives that supports our commitment and dedication to developing treatments and discovering cures for CMT and other INs.
Blog Archive
Blog
Summit Panelist Spotlight: Team CMT Founder Chris Wodke
The Hereditary Neuropathy Foundation’s Team CMT Founder and Manager Chris Wodke is changing the face of Charcot-Marie-Tooth one mile at a time. Chris is an accomplished triathlete, marathon runner, and cyclist.
The CMT Caregiver: Insights From Summit Speaker Gary Barg
HNF is honored to have Gary Barg, noted speaker, author, and publisher on caregiving issues since 1995, speak at the upcoming Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016.
Dorothy J. Fairman Memorial Travel Scholarship
Travel Scholarships up to $1000 USD available for CMT patients/caregivers to attend HNF’s 2016 Patient-Centered Charcot-Marie-Tooth Summit October 6, 2016
CMT and Exercise
HNF wants to help our Inspire members get answers to questions related to Charcot-Marie-Tooth.
About the Patient-Centered Charcot-Marie-Tooth Summit
The goal of the Patient-Centered Charcot-Marie-Tooth Summit will be to expand the role of patients, caregivers and other stakeholders/
What Do We Mean By “Patient-Centered”?
HNF is planning the first ever Patient-Centered Charcot-Marie-Tooth Summit taking place on October 6, 2016 at the 3 West Club in New York City.
Q&A With Summit Attendee Jim Matthews
Q&A With Summit Attendee Jim Matthews
Headaches and Charcot-Marie-Tooth
One topic that has been addressed is headaches and CMT. Some CMT patients have reported tension headaches from off-balance gait, scoliosis, and neck & spine arthritis.
How To Stay Sun Safe Year Round
The cumulative damage caused by exposure to the sun’s harmful ultraviolet rays (UV) can lead to premature skin aging, damage the eyes and surrounding skin, and raise your risk of skin cancer.
About The Summit Venue: 3 West Club, New York City
The Hereditary Neuropathy Foundation has selected historic 3 West Club to hold the first Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016.
Summit Speaker Spotlight: Gary Barg, The Fearless Caregiver
Those caring for patients living with CMT are invaluable members of our community. Caregivers are on the frontlines every day, helping patients manage their daily struggles and challenges of living with CMT.
Categories
Advocacy (7)
Awareness (34)
Centers of Excellence (13)
CMT (1)
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 (3)
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)
Awareness (34)
Centers of Excellence (13)
CMT (1)
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 (3)
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)
Recent Comments