Forty-six schools, eight states, 6600 students. The third year of the Hereditary Neuropathy Foundation’s School Outreach Program was our best yet! From the authors’ home state of Rhode Island, to our current home in New York, and on out to Chicago, Philadelphia, Washington, DC and Dallas, we met our goal of reaching more students, teachers and parents than ever.
Blog Archive
Charcot-Marie-Tooth
New Registry Helps Researchers Find A Cure: Q & A with CEO Kyle Brown, Crossroads
The Hereditary Neuropathy Foundation (HNF) and Hannah’s Hope Fund (HHF) are excited about their partnership to co-fund the Global Registry for Inherited Neuropathies
The Neuropathy Association and the Hereditary Neuropathy Foundation: Co-Host the “Hereditary Neuropathies” Facebook Chat July 24th!
The Neuropathy Association and the Hereditary Neuropathy Foundation are pleased to announce that we will be co-hosting a Facebook Chat on July 24th that focuses on better understanding the diagnosis, care and treatment of hereditary neuropathies.
HNF and Wave Skater form a Partnership
I (Allison Moore) is amazed how life moves in such wondrous ways. My family has the good fortune to spend summers at a beautiful Long Island beach where my husband and boys enjoy riding the waves on boogie boards.
Talking With Classmates about CMT
Older sister Erin, who also lives with Charcot-Marie-Tooth, pitched in along with mom, Monica Hughes. With a polished powerpoint show that included pictures and videos, plus doughnuts at the end, Miah’s classmates were engaged and ready to understand!
Team CMT Kids Goes the Distance!
The biggest Team CMT Kids event of the year featured a group of youth triathletes going the distance to support those who live with Charcot-Marie-Tooth disease.
HNF-WVU-NIOSH Study update:
We are pleased to update our readers on the progress of the WVU-NIOSH study, “A Bi-Directional Translational Model of Exercise Training in the Treatment of Charcot-Marie-Tooth Disease”
School Outreach Program Spreads Its Message Nationwide
From Narragansett to Quidnessett, Coventry to Providence, Warwick to Johnston, we met amazing students at every school. We even ventured into southern Massachusetts, to Braintree and Arlington.
School Outreach Program Update
HNF’s School Outreach Program is having its best year yet, with nearly fifty schools visited in 2012-2013
“Fighter Mom’s” Join Forces
Is it just coincidence, being in the right place at the right time, or is it synchronicity?...
TEAM CMT & CHRIS WODKE
Boasting a growing membership, Team CMT and the Hereditary Neuropathy Foundation (HNF) are celebrating a successful first year of collaboration.
Personal Profile: Estela Lugo, Designing Décor
As a little girl, Estela Lugo now 32, always knew she would do “something with art” when she grew up. “I was drawing, always drawing,” she remembers.
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Webinars – Bracing (1)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (4)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (6)
Webinars – Genetic Testing (3)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (4)
Webinars – Nutrition (3)
Webinars – Pain (5)
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Webinars – PT and Exercise (9)
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Webinars – Surgery (2)
Webinars – Telemedicine (1)
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Community (4)
Emerging Technologies (1)
Faces of CMT (2)
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 (34)
GRIN Patient Registry (39)
HNF Team (10)
Industry (5)
Living with CMT (79)
Media (1)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (4)
Clinical Trials (23)
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 (2)
Genetic Testing (11)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (8)
Nutrition (5)
Occupational Thearpy (2)
Pain (8)
Podcasts (2)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (34)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (3)
Pediatrics & CMT (12)
Registry (16)
Research (99)
School Outreach Program and Team CMT Kids (1)
Special Events (3)
Bike New York (20)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (29)
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 (2)
Ways to Give (4)
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