Dr. Liu shares the consensus that CMT is a lesser known disease and more research is needed to shed light on the experiences of patients with CMT.
Blog Archive
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Summit Panelist Spotlight: Joy Aldrich
After her genetic diagnosis, Joy connected with HNF for advice on AFOs and a letter writing campaign to tell family and friends about her diagnosis.
Summit Speaker Spotlight: Allison Moore
Allison Moore founded HNF in 2001 in an effort to improve the quality of life for people with Charcot-Marie-Tooth.
Summit Speaker Spotlight: Dr. Timothy R. Coté
HNF has invited Dr. Coté to lead the discussion on Public Policy. We will cover issues such as better AFO (leg-bracing) options, fast-tracking drug discoveries and clinical trials, applying for disability benefits, Medicare/Medicaid and services.
Summit Panelist Spotlight: Dr. David Walk
We’ve invited Dr. David Walk to join the panel discussion on “Genotype and Phenotype: Managing Symptoms, The Role of Researchers/Clinicians.”
Register for the Patient-Centered CMT Summit
Don’t wait, reserve your spot at the first Patient-Centered CMT Summit!
Summit Speaker Spotlight HNF’s CSO Sean Ekins
Leaders in Charcot-Marie-Tooth research need to be progressive visionaries, willing and able to push the boundaries to explore every opportunity available to advance therapeutics and clinical trials for CMT.
Summit Panelist Spotlight Matt Downing
Matt Downing, a CMT1A patient, will join HNF’s Founder and CEO Allison Moore in a panel discussion on the good, the bad, and the benefits of participating in a clinical trial.
Summit Speaker Spotlight: Kim Goodsell, The Patient Of The Future
Advocating for her own health, Kim was able to harness the power of genetic information to devise a treatment plan that not only reduced, but reversed much of her disability with CMT.
Summit Speaker Spotlight: Lori Sames of Hannah’s Hope Fund
HNF has the honor of knowing one such GAN patient, Hannah Sames. She was diagnosed with GAN at four years old, and now at age eleven, Hannah can no longer walk on her own.
Summit Panelist Spotlight: Debi Houliares
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.
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.
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Team CMT Members (61)
The CMT Genie (6)
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University of Helsinki (2)
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Burke Insitute (3)
University of Cambridge (1)
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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)
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CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
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CMT Type – SORD Deficiency (9)
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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)
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