On May 3rd I will be in New York and participate in the TD Five Boro Bike Tour. I will be riding with Team CMT to raise awareness and help in finding a cure for CMT
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Work, Ride, Eat, Sleep, Repeat…
One of the things that keeps my motivation up is almost every time I go on a ride I set new personal records on the same segments that I ride weekly.
March 29, 2015: OK…Now What?
January 15th 2015. That was the day I got my official invite to the race, that was the day of no turning back, that was the day I realized I was going to riding my bike a lot this spring and summer, a whole lot!
Sixth Annual Card Party Brunch
On January 23, 2015 dedicated H.E.L.P. (Help Elliot Live Proud) Fund supporters participated in the 6th Annual Card Party Brunch and Boutique at Broken Sound County Club, Boca Raton, Florida. Record numbers flocked into the picturesque country club for a day filled with gourmet food, raffles, cards and a silent auction! HNF Board member Iris Adler increased this event by 50 new faces this year!
Calling All Cyclists… Enjoy NY Sights While Riding to Cure CMT!
Hereditary Neuropathy Foundation (HNF) is excited to participate for the fourth consecutive year in the TD Bank Five Boro Bike Tour. It’s an honor says Allison Moore, Founder/CEO of HNF to once again be chosen as a charity partner in one of the biggest events in New York and the largest cycling event in America.
Bike NY Spotlight: Kristin Gelzins
I am signing up for my VERY FIRST Five Boro Bike Tour. I need your help to find a cure for CMT. Please consider donating to my fundraising page to help me, my family and everyone living with CMT
Team CMT Takes on the Bermuda Triple Challenge
Meet Team CMT member Bill Morgan. Bill and Liz (his wife) recently ran three races back to back in Bermuda for Team CMT.
Q & A with Andy Heck
Our Q&A for the Winter CMT Update is Andy Heck. Andy has been diagnosed with Charcot-Marie-Tooth since four and doesn’t let CMT stop him for living his life to the fullest!
New HNF Team Member, Joy Aldrich Inspires Others Through the CMT Inspire Patient Community
Joy joined HNF in February 2015 to focus on the growth of HNF’s online patient support community as a CMT Advocacy Director. Joy and her husband, Toby, live in Seattle, WA, with their beloved yellow lab, Charley.
Double Your Donation
Corporate matching gift programs are charitable giving programs setup by corporations in which the company matches donations made by employees to eligible nonprofit organizations. For example, if a donor works for Bank of America and donates $100 to the Hereditary Neuropathy Foundation, Bank of America will double the donation by also writing a check for $100.
Taking Matters Into Your Own Hands
Do you have a rare form of CMT?
We were contacted recently from a patient with CMT2D who was looking for advice on how to make a difference. Our recommendations for all people with an ultra-rare form of CMT who want to get involved:
Now GRIN is Accessible in 141 Different Languages!
The Global Registry for Inherited Neuropathies (GRIN) has implemented Google Translate. Why did we choose Google? Because Google is leading the way in teaching computers how to interpret meaning, avoiding the traditional method of decoding language.
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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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