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The CMT Research Foundation is a patient-led, non-profit with one single mission: to raise funds to invest in science that will lead to treatments and cures for CMT.
We strive to address the urgent needs of the 150,000 Americans and over 3 million individuals worldwide affected by this condition, which impacts one in 2,500 people, comparable to the prevalence of multiple sclerosis.
Our impact goes beyond simply making investments. We identify key problems or gaps in progress to a cure, then aggressively find partners to attack the problems. We introduce CMT to the greater drug development community, something that has rapidly increased the number of experts working to solve the disease.
We fund projects with the highest likelihood of leading to clinical trials and approved treatments in the near term. All investments are gated, meaning projects need to achieve milestones defined for each phase of work before receiving funding for the next. Every contract includes a return on the CMT Research Foundation’s initial investment which is then reinvested in new projects.
At the heart of our organization lies a dedicated board of directors, many of whom have personal connections to CMT, driving our commitment to making tangible advancements.

Node: Neuropathy Open Data Exchange - The Webinar

Gene Therapies Demystified

Gene Therapies Demystified: Understanding the Fundamentals for Cmt

From Smartphone Video to Trial Endpoint: AI Motion Analysis in Cmt

Live Webinar: Clinical Trial Update from Nmd Pharma: Cmt Type 1 & Type 2

Everything You Need to Know About Clinical Trials for Cmt

Live Cmtrf Webinar: Can a New Delivery Strategy Unlock Rna Therapies for Cmt?

Request Newly-Diagnosed CMT Patient Package

Give

WEBINAR: Introducing NODE, a New Shared Data Resource for Peripheral Neuropathy Research

Announcing NODE: A New Shared Home for Peripheral Nerve Research Data

Global CMT Research Convention: Travel Guide

New Paper Highlights CMTRF as a Model for Patient-Driven Research Organizations

What Makes This CMT Research Convention Our Most Hands-On Event Yet

Five Reasons to Consider a Planned Gift to CMTRF

Project Report: A Negative Result Points to the Way Forward in CMT4B

CMT Orgs Come together to Advocate for New Clinical Trial Framework

The Promise Society: A New Way to Support CMT Research

Deadline Extended: Submit Your Abstract for the 2026 Global CMT Research Convention

Laura M. MacNeill

Susan Ruediger

Meghan Drummond

Anna Combes

The CMT Research Foundation is launching an innovative fundraising approach for CMT4C. Through the Community Leaders in 4C Program, patients, families, and supporters fund 4C research directly. Join us for a webinar on Wednesday, 11/4, to learn more! https://cmtrf.org/communityleaders4c/

We made the 2026 Global CMT Research Convention available for everyone! Browse every talk at cmtconvention.cmtrf.org.

We've got a data tool that's going to make CMT research faster and cheaper. Come hear about it! cmtrf.org/webinars

A well-deserved standing ovation for our 2026 Catalyst Award Winner, Susan Ruediger, our Chief Mission Officer and Co-founder. The award is presented annually at the Global CMT Research Convention, which wouldn't exist without Susan's tireless work. We, as the staff of CMTRF, are endlessly grateful for her vision, leadership and effort.

Congratulations to Dr. Marina Kennerson, the winner of the 2026 Pathfinder Award for her leadership and contributions to the CMT research field. She traveled more than sixty hours to get to the 2026 Global CMT Research Convention from Australia!

Let the learning begin! The 2026 Global CMT Research Convention is underway, with leaders from across the field sharing their ideas, building on them with colleagues, and developing new collaborative relationships.

It starts today! Looking forward to discussion on the most advanced and pressing questions in CMT research.

September is CMT Action Month, and that means it's also time for the Global CMT Research Convention. CEO Laura MacNeill shares how the convention helped her with a difficult decision about her CMT. REGISTER: https://cmtconvention.cmtrf.org/

Interested in the Global CMT Research Convention in September? We've got a webinar coming up on August 6th to break down reasons you should consider going. Register for the webinar today! cmtrf.org/webinars

Thinking about attending the 2026 Global CMT Research Convention? Our CEO Laura MacNeill explains what you can get out of it. If you're still on the fence, we'll talk through what the convention has to offer and answer any of your questions during our August 6th Convention Preview Webinar. REGISTER FOR THE WEBINAR NOW: cmtrf.org/webinars

As the number of gene therapies in trials for CMT continues to grow, how those gene therapies are regulated will become more important. Sign up for our webinar on July 16 to hear more about the current regulatory landscape and how to advocate for one that opens new doors. cmtrf.org/webinars

We've highlighted the promise of gene therapies in our DEMYSTIFIED webinar series. It concludes on July 16 with a discussion about how these therapies are regulated. Listen in. Ask questions. Get informed. REGISTER TODAY: cmtrf.org/webinars

Register to learn about how gene therapies are regulated and how you can help shape the future. cmtrf.org/webinars

THANK YOU to @officialalanjackson Jackson and the Last Call Tour for the years of support of CMT research!

ENDING THIS MONTH: Early Bird Registration prices for the 2026 Global CMT Research Convention are ending in June. Register today! https://cmtconvention.cmtrf.org/

Gene therapy programs are showing real promise, especially for genetic diseases like CMT. Learn more through our Gene Therapies Demystified series, continuing on June 18. Register at cmtrf.org/webinars

How can CMT patients get involved in research? The convention in September is a great start, but Early Bird Registration ends soon--so sign up! https://cmtconvention.cmtrf.org/

The Zero K Fundraiser Run was a huge success, and we look forward to using the funds for driving CMT research toward a cure! If you couldn't make it, you can still donate at zerokrun.com

Almost to the finish line at the Zero K Fundraiser for the CMT Research Foundation! Join their efforts to cure CMT: https://www.zerokrun.com/

Country Music Superstar Alan Jackson, who has been open about his diagnosis with CMT, is wrapping up his career with a final show for his Last Call Tour in June. We wanted to honor his musical legacy. Here's how you can help: https://cmtrf.org/last-call-tour-alan-jackson/

We're pushing toward a cure for CMT, supporting projects for both individual subtypes and broader research. Read more about how this project contributes to our research portfolio and the field as a whole at ctmrf.org!

Our GENE THERAPIES DEMYSTIFIED series starts May 7; sign up at cmtrf.org/webinars and bring your questions!

Finding a reliable blood-based marker would make clinical trials more efficient and give doctors a straightforward way to evaluate whether a treatment is working, bringing effective therapies to patients faster.

One of the greatest barriers to developing therapies for Charcot-Marie-Tooth (CMT) disease has been the lack of sensitive clinical endpoints capable of detecting meaningful disease progression over shorter trial durations. The CMT Research Foundation has invested in a project with Dr. Wolfgang Pernice at Columbia University to validate DANCER (Digital Assessment of Natural Motion for Clinical Endpoint Research), an AI-powered platform that derives complete 3D whole-body motion data from simple smartphone videos. By capturing highly detailed gait and movement metrics outside specialized laboratory settings, DANCER has the potential to provide scalable, quantitative clinical outcome assessments suitable for use in CMT therapeutic trials. If validated, this approach could help remove critical roadblocks to clinical trial efficiency and accelerate therapy development across CMT subtypes.

The CMT Research Foundation is funding a novel digital-endpoint project with Dr. Wolfgang Pernice at Columbia University to enable more sensitive, quantitative measurement of motor function in CMT. This work leverages an advanced artificial intelligence (AI) platform, DANCER, which can derive highly accurate 3D whole‑body reconstructions from simple 2D videos captured on any smartphone. By extracting detailed gait and movement metrics from these videos, DANCER has the potential to generate objective, reproducible outcome measures that could help close a critical endpoint gap in CMT clinical trials. Because the technology is designed to work without special calibration and in non‑clinical settings, it could ultimately allow patients to contribute high‑quality data from home, increasing trial feasibility and reducing timelines and real‑world relevance. Join us for a live discussion to hear how this approach could transform CMT drug development and what it may mean for both researchers and people living with CMT. Register: cmtrf.org/webinars

Join us Thursday, February 12, 2026 at 7pm ET for a live discussion with Daniel Brennan, NMD Pharma’s SVP of Corporate and Commercial Strategy. This is a webinar you should not miss. We are sharing an update from @nmdpharma regarding topline results from their Phase 2a clinical study called SYNAPSE-CMT. This clinical study explored whether the new, investigational drug ignaseclant (formerly NMD670), could provide benefit adults with Charcot-Marie-Tooth disease (CMT) type 1 and type 2. The CMTRF is optimistic about what ignaseclant and the results of the clinical trail could mean for the CMT patient community. Register at cmtrf.org/webinars

The CMT Research Foundation congratulates NMD Pharma and, above all, the 81 individuals who took part in the Phase 2a SYNAPSE‑CMT trial of ignaseclant for CMT1 and CMT2. While the primary endpoint on the 6‑minute walk test was not met, it is encouraging to see consistent improvements in strength, hand function, and patient‑reported outcomes over just 21 days, with benefits persisting beyond the treatment period. These results strongly support longer‑duration studies of ignaseclant and reinforce the growing momentum toward the first approved therapies for people living with CMT. Read more: cmtrf.org/news

Are you curious about the clinical trials currently underway for Charcot-Marie-Tooth disease? Have you thought about participating, but aren’t sure how the process works? Or wondered how decisions about CMT clinical trials are made in the first place? Join the CMT Research Foundation for an informative and timely webinar featuring Jenneen DeFiore, Vice President of Neuroscience at Thermo Fisher Scientific and a nationally recognized expert in the design and execution of clinical trials. Register at cmtrf.org/webinars

Gaining Velocity Toward a World Without CMT: A Message from CEO and Board Chair of CMTRF: https://cmtrf.org/year-in-review-2025/

There are only a few hours left in 2025, and time is running out to make your tax-deductible, year-end donation to support CMTRF’s mission to advance research for Charcot-Marie-Tooth disease. This year, your support helped CMTRF advance seven new research projects, bringing our total pipeline to 32. We have additional projects ready to move forward, and your gift today will help ensure that this vital momentum continues into 2026. Until midnight, your gift will be matched dollar-for-dollar up to $150,000 thanks to the Bentzin Family Foundations. This means every contribution — no matter the size — will have twice the impact on the research that moves us closer to treatments and cures for all types of CMT. This match opportunity ends when the clock strikes midnight. Please consider making your year-end gift now and help propel this critical work forward for the CMT community: cmtrf.org/donate

2026 holds promise for Charcot-Marie-tooth disease patients and their families. CMTRF’s investment in critical research has advanced multiple projects to the clinic, moving the entire field one step closer to available treatments for patients who urgently need them. By giving today, you will DOUBLE your impact. Thanks to the Bentzin Family Foundations, all donations will be matched dollar-for-dollar up to $150,000 through midnight. That means every gift, no matter the size, will have double the power to accelerate the most promising research forward. Please consider making your tax-deductible year-end donation before the night ends. Together, we can carry this critical work into the new year with even greater momentum: cmtrf.org/donate

If you joined us in Cambridge this past September, you witnessed something truly special: a powerful gathering of patients, scientists, researchers, biotech innovators, and pharmaceutical leaders, all driven by a shared urgency to collaborate, innovate, and accelerate progress for CMT. The energy, momentum, and optimism throughout the weekend made one thing clear: the future holds true promise for a world with treatments for CMT. We’re excited to invite you to save the date for the 2026 Global CMT Research Convention, happening September 24th-26th in Cambridge, Massachusetts. This landmark event will once again bring the global CMT community together to spark bold ideas, foster meaningful partnerships, and push research forward. More details will be announced in the coming months — mark your calendar now and plan to be part of the momentum. cmtconvention.cmtrf.org

As we approach the end of 2025, we want to express our heartfelt gratitude for the dedication and generosity you’ve shown throughout the year. Your support fuels our progress toward treatments and cures for Charcot-Marie-Tooth disease, and we could not do this work without you. We hope that before you ring in the New Year, you will consider supporting CMTRF with a tax-deductible donation to help fund treatments and cures for all types of CMT: https://cmtrf.org/donate/ This year, thanks to the incredible generosity of the Bentzin Family Foundations, your year-end donation will be matched dollar-for-dollar up to $150,000 through midnight on December 31 — doubling your impact at a pivotal moment. Every donation — no matter the size — helps accelerate the work that brings real hope to families living with CMT. From all of us at CMTRF, thank you for standing with us and for being such an important part of this mission. #CMTresearch #CMTtreatments

CMTRF funded partner 82VS, the Venture Studio of Alloy Therapeutics, is looking to solve one of the toughest problems in Charcot-Marie-Tooth disease: getting RNA-based therapies to the peripheral nerves and cells damaged by CMT. This project uses specially designed antibodies to guide RNA therapies directly to nerve cells, and if successful, could open the door to an entirely new class of treatments for CMT1A and lay the groundwork for therapies that help many other forms of CMT. Join us Thursday, December 11, at 7 p.m. ET via Zoom, as Dr. Carlos Loya and the CMTRF team walk through the challenge of delivering treatments to nerves, share early encouraging results from this CMTRF-funded project, and discuss what this approach could mean for the future of CMT care. There is no cost to attend. To register, visit https://cmtrf.org/webinars/

⏰Time Is Running Out — Triple Your Impact Today: cmtrf.org/the-greatest-gift/ This #GivingTuesday, your gift will be tripled to help families living with Charcot-Marie-Tooth disease protect the moments that matter most. Grace Brusky was diagnosed with CMT1A just before her 16th birthday. Over time, the disease has changed how she experiences everyday life, limiting activities she once loved. Still, Grace holds tight to the moments that make life meaningful — time with family, chasing dreams and simply being a teenager. “CMT is part of my life, but it doesn’t define it. Your support helps make sure it never has to.” Every gift made before midnight will be TRIPLED to support critical research toward treatments and cures for all types of CMT. Give today. Triple your impact. Help protect the moments that matter most. Donate now at cmtrf.org/the-greatest-gift/ . . . #givingtuesday #charcotmarietoothdisease #cmt #cmtrf #giving #charcotmarietooth #donate

Today is #GivingTuesday and all donations made before midnight will be TRIPLED to accelerate critical research toward treatments and cures for all types of #CMT. cmtrf.org/the-greatest-gift This season, we are sharing the stories of individuals living with CMT, including Rocío, Kaileen, Alex, Kate, Linda and Jenny. Their experiences remind us that a cure is more than scientific progress — it is hope, independence and the freedom to fully participate in the moments and traditions that matter most. Today, you can help make that future possible. Read their stories and TRIPLE your impact by making a #GivingTuesday donation before midnight. cmtrf.org/the-greatest-gift/ #Donation #TripleMatch #CharcotMarieTooth #CharcotMarieToothDisease

TRIPLE YOUR DONATION TODAY! cmtrf.org/TheGreatestGift Today is #GivingTuesday and all donations made before midnight are matched 3x! By tripling your donation, you’re directly fueling progress in the fight against Charcot-Marie-Tooth disease. Together, we will give CMT patients around the world their greatest gift of all — a cure for CMT. Donate: cmtrf.org/TheGreatestGift

For families living with Charcot-Marie-Tooth disease, the greatest gift they could receive is hope for a cure. Tomorrow, on GivingTuesday, we are asking you to embody the spirit of the season and give the gift of a donation that will help bring that hope to the millions of individuals and families affected by CMT. Beginning at 12:00 a.m. ET, your generosity will go even further. Your Donation will be TRIPLED on GivingTuesday! That means 3x the impact to accelerate discoveries and breakthroughs CMT patients urgently need. By tripling your donation, you’re directly fueling progress in the fight against CMT. Together, we will give CMT patients around the world their greatest gift of all — a cure for CMT. https://cmtrf.org/the-greatest-gift/

While the world chases Black Friday bargains, families living with Charcot-Marie-Tooth disease are longing for something you can’t find in any store: the chance to hold onto their independence, preserve precious abilities and reclaim movement that CMT threatens to take away. For them, every day is about fighting to keep the dexterity, mobility and freedom most of us take for granted. When Jenny was diagnosed with CMT in 2018, she had no idea it would uncover a long-hidden family connection — her maternal uncle and her two daughters also tested positive. Born with clubbed feet and mild arthrogryposis, Jenny has faced mobility challenges her entire life. As CMT progressed, severe breathing issues led to a tracheostomy and ventilator six years ago, taking away her ability to work, drive and even speak. Jenny calls it “the most devastating and frustrating” loss of all. Once passionate about cooking, baking, decorating and singing with her kids during the holidays, she now relies on others to carry out those traditions. Still, she finds joy in what she can do — gift shopping, wrapping presents with her husband, and laughing as the family belts out The Muppets’ 12 Days of Christmas: “It’s not Christmas until we all get through it and BA DUM DUM DUM as loud as possible.” What matters most now is time with loved ones — listening to their laughter, conversation and jokes. “We are a goofy bunch, and I love that.” Your gift today moves us closer to that future. Together, we can give Jenny — and everyone living with CMT — the greatest gift of all: a cure, and the time to continue making memories and enjoying the traditions they love. DOUBLE your donation today at cmtrf.org/the-greatest-gift

Every December, Kaileen looks for light. Not just the glittering bulbs strung across her Canadian neighborhood — but the kind of light that reminds her that hope still exists. Because for Kaileen, simple joys like wrapping presents or finding her voice again are no longer guaranteed. Yet her greatest joy — her young son, Jacob — keeps that light shining. And the road to finding that light began long before her diagnosis. Kaileen lived years without answers. Her symptoms began in childhood, followed by a sudden, unexplained illness at age seven, and decades of gradual decline. In her early twenties, her mobility weakened, her breathing became compromised, and she slowly lost her voice. It wasn’t until she was 27 that she finally received a diagnosis: CMT2D caused by a spontaneous genetic mutation. Bring hope — and light — to families like Kaileen’s. Every donation counts, and all gifts are doubled up to $150,000 through December 31. Give them their greatest gift of all: a cure for CMT. Read Kaileen’s story and donate today at https://cmtrf.org/the-greatest-gift/ . . . . #charcotmarietoothdisease #charcotmarietooth #cmt #greatestgift #holidays #doubledonation #donation

Imagine finally getting an answer for the symptoms that have been affecting you for years — only to hear your doctor say, “There is no treatment and there is no cure.” The relief of a diagnosis is instantly replaced by uncertainty about how quickly your condition will progress, how much your life will change, and what the future will hold. You learn that this disease could one day affect your children or grandchildren, and the reality sets in: right now, there are no FDA-approved therapies and little guidance to offer hope or clarity. For those living with CMT, this is the reality. This disease gradually takes away the ability to fully participate in daily life and the cherished traditions that make it meaningful — and it steals precious time. Time to continue putting up holiday villages, time to keep baking cookies with family, time to gaze at holiday lights, time to wrap presents for loved ones, and time to share in the moments without pause. This holiday season, we invite you to explore the personal stories of CMT patients — like Linda Frakes, Alexander Ferrera, Jenny Richards, and Kaileen Nelson — as they share the moments and traditions that matter most, and the challenges CMT brings. As you connect with their stories, please consider making a donation in their honor at https://cmtrf.org/the-greatest-gift/ Thanks to the Bentzin Family Foundations, your donation will be DOUBLED up to $150,000 through December 31. Every gift this holiday season, no matter the size, directly supports this vital research. Together, we can give CMT patients the greatest gift of all: a cure, and the time to continue making memories and enjoying the traditions they love. View their stories and donate today at https://cmtrf.org/the-greatest-gift/

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