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Hereditary Neuropathy Foundation, Inc.

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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases

Mission: The Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 dedicated to finding treatments and a cure for Charcot-Marie-Tooth disease (CMT) and related hereditary neuropathies while providing support and extensive information for those living with CMT and their families. HNF promotes and supports innovative therapeutic driven research.

Programs: High throughput screen (hts) hits tested for off target effects, cross breeding of mouse model, and exercise physiology on rat model for charcot-marie-tooth. These all represent pre-clinical studies that will be useful for translating therapies to the clinic. In addition, the expansion of the global registry for inherited neuropathies (grin), continued awareness campaigns for cmt and hnf's research program; therapeutic research in accelerated discovery (triad) through the new state of the art interactive website (www. Hnf-cure. Org), cmt update quarterly newsletter, and cmt inspired community

Community Stories

6 Stories from Volunteers, Donors & Supporters

1 Luke15

General Member of the Public

Rating: 1

What a coincidence, five people gave five-star reviews all on the same date. No funny business happening there, I'm sure.

The IRS Form 990s filed by the foundation show it to be just another sham 501(c)(3) organization. Whatever sincere purposes it may have had at the beginning has long evaporated. It has since morphed into a vehicle for donations to line the pockets of family members.

1

General Member of the Public

Rating: 5

We are capable of so much more than we imagine.

For fifteen years my family lived in the shadow of a diagnosis that didn't have a name, but affected our everyday life. Running could not be accomplished, shoe shopping was near impossible, and daily tasks were a bit tougher to accomplish. Fifteen years later we found the name - Charcot Marie Tooth the most commonly inherited neurological disorder affecting 1 in 2500 people, but no one has ever heard of it. It creates progressive loss of muscle tissue and sensation throughout the body.

Hereditary Neuropathy Foundation gives my family and others an opportunity to have the research to fight this currently incurable disease.

If you asked me three years ago if I was capable of running a half marathon, I would have taken you as a crazy person. Today I will be signing up for my FOURTH half marathon, proudly wearing my Team CMT shirt and raising every dollar for family's and individuals fighting together against CMT. Each mile is so much more meaningful when I know that I am changing my family's future. Help me to continue on my mission.

#thisiswhyigive #givingtuesday #teamcmt

www.hnf-cure.org

Review from #MyGivingStory

General Member of the Public

Rating: 5

Charcot-Marie-Tooth and my Family!

Charcot-Marie-Tooth is a relatively unknown disease, even though it’s the most common inherited nerve disorder affecting 1 in 2,500 people. CMT causes peripheral nerve degeneration, mobility impairments, and there is no cure.

My father suffered daily with CMT and is now living CMT free in heaven. Now my sister endures the same struggles with CMT. She has dedicated her life by working countless hours to raise funds for the 'biggest disease no one has ever heard of.”

Diagnosed with cancer at age 29 , she was given a chemotherapy which triggered this debilitating disease. Her legs are atrophied from the knees down and her hands are too weak to perform simple tasks we take for granted. She needs help buttoning a shirt, putting on jewelry, and requires leg braces to walk without falling.

I am committed to find a cure for this disease so my sister can live CMT free. I donate to the Hereditary Neuropathy Foundation (HNF) at www.hnf-cure.org.

HNF is dedicated to supporting those living with CMT by raising awareness and money to fund research for new treatments and a cure.

Review from #MyGivingStory

General Member of the Public

Rating: 5

Imagine as an athlete having to pay attention to every step you take because you are worried about catching your foot and falling.
Imagine wondering when the burning will start in your feet. I don not have to imagine because I have Charcot-Marie-Tooth or CMT.
It is the most common inherited neuro-muscular condition affecting 1. in 2500, or about 175,000 Americans. It is a condition I share with my dad, aunt, sister and two nieces. When I learned I had CMT I knew I was lucky to still be running because many with CMT wear braces, struggle with profound fatigue. Because the damage to the nerves affects hands and lower legs many struggle with everyday tasks like writing, opening jars and dressing.
I run high profile events like the Boston Marathon to raise awareness for CMT and money for CMT research. I founded Team CMT and so far we have 176 members in 31 states and six countries. We have raised over $100 K. Despite many of us being told people with CMT cannot be athletes, we have over 2 dozen members with CMT. Four have completed the Ironman Triathlon. We are sponsored by the Hereditary Neuropathy Foundation. I am so thankful for their support. I have also authored the book 'Running for My Life-Winning for CMT'. This year I participated in the Aquathlon World Championship in Chicago as a member of Team USA in Chicago. I do triathlons around the country and write about the experience on my blog at www.run4cmt.com

Review from #MyGivingStory

General Member of the Public

Rating: 5

'The biggest disease you've never heard of' www.HNF-cure.org/Bernadette

I dedicate my life to being an advocate for Charcot-marie-Tooth Disorder because not only do my brother and I have it, but my late father suffered with CMT along with other family members. It's not easy to watch your family suffer but we did it together. CMT is known as the most common hereditary neuropathy in the world, yet many doctors haven't even heard of it or they know little to nothing about it. CMT is a progressive illness that's very debilitating and painful with no cure!! HNF is a non profit for us living with CMT and I am honored to be a part of the movement. Here's to raising awareness for CMT in memory of my Dad. The most loving, strong, smart caring man who is missed every day!!!
#CharcotMarieToothAwareness

Review from #MyGivingStory

1

Advisor

Rating: 5

The Hereditary Neuropathy Foundation is run by a highly motivated and compassionate team with a singular goal: To find treatments and ultimately a cure for Charcot Marie Tooth. The CMT Team and Board care deeply about the patient population they serve, and specific needs of this patient community are always put foremost when this organization makes research and patient support decisions.