Allyson O’Connor won’t let CMT get her down. She was unofficially diagnosed at the age of 10. Her Dad had the same symptoms, but at the time genetic tests were not available. Her diagnosis was based on an EMG. After having her two children, now age 8 and 6, she decided it was important to determine if she definitely had CMT.
Blog Archive
Team CMT Kids
Another Successful Year Spreading CMT Awareness
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.
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.
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.
Arlene On the Scene: Barrington Books Fall Festival
Together, she and Carol answered questions from young and old alike about Charcot-Marie-Tooth (CMT). “The festival was such a nice opportunity to let kids know about Arlene and raise awareness about CMT,”
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Faces of CMT – James (1)
Faces of CMT – Jaxson (6)
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Featured (17)
GRIN Patient Registry (25)
HNF Team (10)
Living with CMT (72)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
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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)
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Emotional and Mental Health (8)
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Research (77)
School Outreach Program and Team CMT Kids (1)
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Bike New York (18)
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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)
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University of Miami (1)
University of San Antonio Texas (1)
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Applied Therapeutics (7)
Pharnext (9)
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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)
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