We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
Author Archive
Courtney
Foods That Help Muscle Recovery
If you have Charcot-Marie-Tooth, moderate exercise is usually best, especially when combined with a healthy diet.
Perception Shift
Throughout my life many different people have impacted my views on certain things, whether it be how I speak, how I dress, what I eat or even who I’m friends with. I now consider my viewpoint on life much more mature and sophisticated than it was 10 years ago or even 5 years ago. I think more logically than ever before and I am much wiser now because of my mistakes and because of my success. Recently in my life I met another person who greatly impacted my life.
Personal Stories: Triathlete, Trainer with Charcot-Marie-Tooth
In spite of high foot arches and trouble with balance, Joy von Werder of Winter Springs, FL has always been a runner and cyclist. She was also eager to participate in a triathlon. “The training and racing aspects really appeal to me,” she explained. There was one huge problem though. Joy didn’t know how to swim. “So there I was, 39 years old, taking swimming lessons from the boy who gave my little kids lessons,” Joy laughs, but her voice changes quickly as she describes her first race.
Member Alyson O’Connor Won’t Let Her CMT Stop Her!
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.
From the words of a CMT Hero
“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”
I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over
Using Zebrafish to Search for Therapeutics for CMT2A
Research on CMT is global, and covers both laboratory and clinical studies. It is critically important to be aware of what is happening elsewhere as well as in the USA because it can have implications for what we do and fund at the HNF.
Saturday September 27, 2014: Spin for the Cure New York City
Grab your shoes and spin CRANK Style NYC!
When: Saturday, September 27, 2014
Where: 1658 3rd Avenue New York, NY 10128 (between 92nd & 93rd Street Upper East Side)
Time: 1:00 – 3:00 pm
Sunday, November 2, 2014: Grace’s Courage Crusade Brunch
This year our Chief Science Officer, Sean Ekins, will attend the event and provide an update on the exciting research HNF has funded, thanks to the generosity of Grace’s Courage Crusade!
November 7, 2014: A Hollywood Affair
Join us November 7, 2014 at A Hollywood Affair to raise money and awareness to fund research for Autosomal Dominant Optic Atropy (ADOA).
Jillian is battling this disease, which involves vision loss, hearing loss, disturbances in the nerves used for muscle movement and sensation, and muscle weakness.
Dress like your favorite celebrity to have your moment on the Red Carpet!
November 15, 2014: Havana Nights Fundraiser
Join us November 15, 2014 in Ft. Lauderdale for an Havana Nights Fundraiser to raise money and awareness to fund research for CMT Type 6.
Thursday, December 4 – Saturday, December 6: Champions for Charity Shop Til You Drop Americana Manhasset, New York
Holiday Shopping Benefit – Shop Till You Drop
Hereditary Neuropathy is participating in the Americana Manhasset’s Champions for Charity®. From Thursday, December 4 through Saturday, December 6, over 70 participating Americana Manhasset and Wheatley Plaza stores will donate 25% of designated pre-tax purchases.
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CMT Update (74)
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CMT-Connect Webinars (11)
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Webinars – Adaptive Driving (2)
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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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 (2)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (37)
GRIN Patient Registry (39)
HNF Team (10)
Industry (6)
Living with CMT (80)
Media (1)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (5)
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 (11)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (23)
CMT Type – CMT1B (3)
CMT Type – CMT1X (4)
CMT Type – CMT2A (10)
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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