When Debi’s son Zach was first diagnosed with CMT Type 6 in 2014, after 14 years of doctors trying to figure it out, she couldn’t believe there was a disease out there that no one has ever heard of.
Author Archive
Courtney
How Alter-g Works
Using “unweighting technology”, the Alter-G makes you feel up to 80 percent lighter—so if you weigh 100 pounds, you could feel as light as 20 pounds on the treadmill.
Summit Speaker Spotlight: Robert Moore
Multiple Sclerosis is the most common autoimmune disorder affecting the central nervous system, with more than 2.3 million people affected worldwide.
Summit Speaker Spotlight: Dr. Florian Thomas
Hereditary Neuropathy Foundation is hosting the first Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016 in New York City.
Summit Panelist Spotlight: Genetic Counselor Chris Tan
Adding a genetic counselor to your team of healthcare professionals can be a great benefit for CMT patients and their caregivers.
Summit Panelist Spotlight: Dr. Mark Gudesblatt
HNF has invited Dr. Gudesblatt to join us as a panelist on “Standard of care and clinical outcome measures to impact the patient and future research” at the Summit.
Summit Speaker Spotlight: Dr. Robert Burgess
Dr. Burgess is on the scientific advisory board of the Hereditary Neuropathy Foundation, and also serves on the Cellular and Molecular Biology of Neurodegeneration grant review panel for the National Institutes of Health.
Summit Speaker Spotlight: Dr. James Nussbaum
HNF invites Dr. James Nussbaum, PT, PhD, SCS, EMT, to lead us in a discussion on “Gaps in Available Patient Reported Outcomes and Barriers to Therapy Development” at the Summit.
Summit Speaker Spotlight: Tim Boyd From NORD
HNF has partnered with NORD to help us find the solutions and realize a brighter future for those living with CMT and other INs
Summit Speaker Spotlight: Dr. Lucia Notterpek
We would like to introduce you to Dr. Lucia Notterpek, an HNF Scientific Advisory Board member
Summit Panelist Spotlight: Estela Lugo
A long-time member of the CMT community, HNF enlisted Estela to become a moderator for our CMT-Connect™ workshops. She has generously committed her time to help lead and teach other CMT patients in her community.
Summit Panelist Spotlight: Kristin Gelzinis
HNF welcomes CMT community member Kristin Gelzinis, who will participate in the much anticipated panel discussion on exercise and the CMT patient.
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Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
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Featured (28)
GRIN Patient Registry (39)
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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)
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Fashion and Products (1)
Genetic Testing (11)
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Telemedicine (1)
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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)
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Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (28)
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Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
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Burke Insitute (3)
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University of San Antonio Texas (1)
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Applied Therapeutics (10)
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CMT Type – HDAC6 (1)
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CMT Type – SORD Deficiency (9)
Upcoming Events (3)
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