Hereditary Neuropathy Foundation

Hereditary Neuropathy Foundation Our mission is to cure Charcot-Marie-Tooth and support patients and families. The Hereditary Neuropathy Foundation is a leader supporting those affected by CMT.

Our organizational mission is to fund innovative research that will lead to better treatments and a cure for those affected by CMT. Our online CMT Community connects patients, families, friends and caregivers for support and inspiration. We hope that you’ll take the time to join the CMT Support Community and connect with others who share our concerns related to diagnosis, managing symptoms, and tr

eatment options such as bracing, orthotics, and exercise. Most of all, you will find comfort that you’re not along. http://www.hnf-cure.org/online-support-community/

Summer Birthdays, We See You 🎂 🎉If your birthday falls between June and August, this message is for you.What if this yea...
05/26/2026

Summer Birthdays, We See You 🎂 🎉

If your birthday falls between June and August, this message is for you.

What if this year, your birthday did something bigger?
Birthday wishes can become CMT breakthroughs. In just five minutes, you can set up a Facebook Birthday Fundraiser for HNF and let your network do the rest. You'd be surprised who is watching your journey, cheering you on, and ready to give when you show them what matters to you.

No awkward asks. No event planning. Just a few clicks, your birthday, and a cause worth celebrating.

Every dollar raised moves us closer to treatments and a cure for Charcot-Marie-Tooth disease. Real research. Real impact. Started by you, on your birthday.

It's the best gift you can give, and the easiest one to set up.

🎂 + 🎉 + you = accelerated research!

https://www.hnf-cure.org/you-can-help/facebook-fundraiser/

💙 Thank You for Being Part of Our 2026 CMT Summit!What an unforgettable weekend! With over 200 attendees, this was our b...
05/26/2026

💙 Thank You for Being Part of Our 2026 CMT Summit!
What an unforgettable weekend! With over 200 attendees, this was our biggest CMT Summit yet — a powerful gathering filled with connection, learning, hope, and inspiration. We are deeply grateful to every single person who joined us and helped make this event so meaningful and special. 🙌✨
A heartfelt THANK YOU to NMD Pharma and CEO Thomas Holm Pedersen, PhD, for their generous partnership and unwavering support of the Summit. Their dedication to advancing CMT research, developing life-changing therapies, and moving us closer to a cure is truly inspiring.

Dr. Pedersen’s incredible keynote helped set the tone for an amazing weekend filled with collaboration, innovation, and hope for the future. Together, we are making progress. 💙

Read more and relive the highlights from the 2026 CMT Clinical Trial Readiness Summit here:
https://www.hnf-cure.org/community/thank-you-for-an-incredible-2026-cmt-clinical-trial-readiness-summit/

Link in bio or https://www.hnf-cure.org/cmt/patient-resources/Today is Global Accessibility Awareness Day, and we're cel...
05/21/2026

Link in bio or https://www.hnf-cure.org/cmt/patient-resources/
Today is Global Accessibility Awareness Day, and we're celebrating every step, every ramp, every resource that makes life with CMT more livable. 💜

Throwing it back to our own Bernadette, HNF CMT Ambassador and team member, at the ribbon-cutting of an accessible Mobi Mat at the NJ shore. This is the work we show up for.

CMT doesn't pause. Neither do we.

Did you know HNF's Patient Resource page covers 29 categories built for the CMT community? From bracing and PT to home accessibility, inclusive employment, legal rights, mental health, adaptive driving, canine companions, and so much more. It's one of the most comprehensive libraries available for people living with CMT.

Tap the link in bio to explore everything HNF has built for you. 💪

🔗 Apply at: https://forms.gle/K6afcvM9oWq5AHaT9HNF is proud to partner with our CMT Dream Team Ambassador, Daniel Blevin...
05/15/2026

🔗 Apply at: https://forms.gle/K6afcvM9oWq5AHaT9

HNF is proud to partner with our CMT Dream Team Ambassador, Daniel Blevins, MSHS, NBC-HWC, to bring the CMT Unbroken Men’s Cohort to our community.

Strength. Identity. The Courage to Adapt.

Daniel knows CMT from the inside. A combat veteran, adaptive athlete, author, and health coach, he has climbed Mount Kilimanjaro, completed cross-country cycling events, and earned multiple powerlifting accomplishments — all while living with CMT.

His professional work spans veteran wellness, trauma recovery, and helping people rebuild meaning, purpose, and identity after life changes course.

That expertise is what he’s bringing to this program.

The CMT Unbroken Men’s Cohort is an 8-week, 6-session small-group experience built through the lens of posttraumatic growth, adaptive identity, and lived experience. It’s designed to help men move from isolation and survival into connection, resilience, emotional strength, and forward direction. This is about learning how to build a meaningful life in a body that doesn’t always cooperate.

Here’s what to know:

6 sessions over 8 weeks
Sundays at 2:00 PM Arizona/Pacific Time
Limited to 15 men
June 21 through August 9

Space is intentionally small. Every participant gets a real experience, not just a seat.

If you’re a man living with CMT, or you know someone who is, this is worth sharing.

Apply with link below or via bio link!

https://forms.gle/K6afcvM9oWq5AHaT9

Learn more at revolutionwell.org

The CMT Biobank Is Coming to Philadelphia, PA – July 17 & 18! 🧬 We would love for you to participate in the CMT Biobank!...
05/15/2026

The CMT Biobank Is Coming to Philadelphia, PA – July 17 & 18! 🧬 We would love for you to participate in the CMT Biobank! 💙

The CMT Biobank is a vital research initiative helping advance our understanding of Charcot-Marie-Tooth disease and bringing us one step closer to effective treatments — and ultimately, a cure. Every participant helps make a real difference in the future of CMT research.

To sign up, please complete the form here: https://forms.monday.com/forms/93d1c8a8df0bd8d2b879c3423ca9af70?r=use1
Once you submit the form, we will follow up directly with all the details, including location, timing, and what to expect on the day of your visit.

If you have any questions in the meantime, please don’t hesitate to reach out. We hope to see you there! ✨

Dear CMT Community,The Hereditary Neuropathy Foundation is leading the charge in CMT research and patient advocacy worl...
05/12/2026

Dear CMT Community,

The Hereditary Neuropathy Foundation is leading the charge in CMT research and patient advocacy worldwide, and we are moving faster than ever. Now, we are looking for bold, connected, and committed leaders to join our Board of Directors and help drive the next chapter of progress.

This is not a ceremonial role. This is a chance to help accelerate real treatments through HNF’s CMT Cure Accelerator, our flagship initiative investing in breakthrough science, AI-driven discovery, and emerging therapies to bring treatments to patients faster.
Link in bio 👆or below!

We are seeking individuals with:
🔹 Expertise in law, finance, medicine, regulatory affairs, strategic planning, fundraising, or marketing
🔹 Strong professional networks and leadership experience
🔹 A commitment to advancing rapidly evolving science and technology
🔹 A global perspective and passion for improving the lives of patients and families

Patients, caregivers, researchers, clinicians, and industry leaders from around the world are encouraged to apply.

If you’ve been waiting for a meaningful way to help move the needle on CMT, this is it. 💙

https://forms.monday.com/forms/069a54be59bdb0da3c1813301142ce79?r=use1&utm_source=ig&utm_medium=social&utm_content=link_in_bio

05/09/2026

🙏👟We’re so grateful to our CMT partner, for providing AFO-friendly footwear to all of our Summut Adaptive Fashion Show models! Billy’s has also generously offered to donate 10% of proceeds to HNF through our partner link in bio or below! Plus get 10% off any style!

https://billyfootwear.com/?ref=HNF-Cure

🌸🙏 Thank you to CMT Rockstar Mom, Heather for all of her continued support and dedication to improving lives for ALL CMT families!

This Mother’s Day weekend, we’re celebrating every CMT mom who was told what she couldn’t do — and did it anyway. 💐Meet ...
05/09/2026

This Mother’s Day weekend, we’re celebrating every CMT mom who was told what she couldn’t do — and did it anyway. 💐

Meet Melissa Amalfitano. She was told she couldn’t be a pastry chef because of her hands. She graduated second in her class. Over 13 years, she built a thriving cake and dessert business — creating intricate edible art with the very hands people doubted.

“These hands were never the limitation. They were the miracle.”

Melissa’s story, shared last month at HNF’s 2026 CMT Summit, is a 5-minute reminder of what it means to adapt, persist, and refuse to let CMT define what you’re capable of creating.

Watch her full patient story at the link in bio. 🎂 or click below:

To Melissa, and to every CMT mom — whether you’re living with CMT, raising a child with CMT, or being raised by someone who is — we see you. We honor you. Happy Mother’s Day. 💛

https://youtu.be/n2s2UsMFnGw?si=orZ9ZocFVosWsVpf

Address

1641 Third Avenue #28K
New York, NY
10128

Opening Hours

Monday 8am - 5pm
Tuesday 8am - 5pm
Wednesday 8am - 5pm
Thursday 8am - 5pm
Friday 8am - 5pm

Telephone

+12128605405

Website

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