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Hunter's Quest for the Cure

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Hunter's Quest for the Cure

Charcot-Marie-Tooth disease (CMT) is an inherited neurological disorder for which there is no treatment or cure. Hunter needs your help to change that.

Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States. CMT, also known as hereditary motor and sensory neuropathy (HMSN) or peroneal muscular atrophy, comprises a group of disorders caused by mutations in genes that affect the normal function of the peripheral nerves. The peripheral nerves lie outside the brain and spinal cord and supply the muscles and sensory organs in the limbs. A typical feature includes weakness of the foot and lower leg muscles, which may result in foot drop and a high-stepped gait with frequent tripping or falls. Foot deformities, such as high arches and hammertoes (a condition in which the middle joint of a toe bends upwards), are also characteristic due to weakness of the small muscles in the feet. In addition, the lower legs may take on an "inverted ch*****ne bottle" appearance due to the loss of muscle bulk. Later in the disease, weakness and muscle atrophy may occur in the hands, resulting in difficulty with fine motor skills. Some patients experience pain, which can range from mild to severe.

10/28/2026

💪🔬 Can science help rebuild muscle damaged or lost to neuromuscular disease?

At the 2027 MDA Clinical & Scientific Conference, muscle regeneration and repair will once again be a key topic as researchers explore new ways to restore muscle function and advance potential treatments for neuromuscular diseases.

In our latest post, MDA Chief Research Officer Angela Lek, PhD, shares insights on emerging stem cell therapies, research breakthroughs, cross-disease collaborations, and the path toward clinical trials.

Get the latest insights and learn how collaboration is helping move muscle regeneration research forward!

🔗 Read the full blog post: https://mdaquest.org/muscle-regeneration-remains-a-hot-topic-at-mda-clinical-scientific-conference/

10/20/2026

🧬🔬Decoding scientific papers it's not easy at al, but staying informed is the best way to tackle the everyday challenges of CMT together, instead of treating it like an enemy we have to fight.

That is why we are incredibly excited to share the 2026 edition of "Advances in Research for Charcot-Marie-Tooth Disease". This massive, comprehensive guide breaks down exactly what is happening in the scientific landscape right now. It gives us clear, practical updates on active clinical trials, emerging therapeutic pipelines, genetic discoveries, and the crucial biomarkers needed to accelerate treatments.

A huge thank you to Téléthon for producing and publishing this invaluable resource for the global rare disease community, and a special round of applause to our very own Alexander "Alex" Hoyau for his meticulous revision work.

Because making science accessible means speaking everyone's language, you can download the guide in English, French, and a localized Italian edition translated by our friends at ACMT Rete per la Charcot Marie Tooth.

Grab your preferred version at the link below, have a good read, and let's keep bridging the gap between complex biomedical research and patient empowerment!

🇬🇧 🇫🇷 🇮🇹
https://ecmtf.org/the-2026-edition-of-advances-in-research-for-charcot-marie-tooth-disease-cmt/

10/16/2026

CMTA-INC Alliance Announces 2027 Inherited Neuropathies Fellowship Recipient!

Congratulations to Dr. Brendan Zotter of Johns Hopkins, who will focus on developing improved gene therapy delivery methods for Charcot-Marie-Tooth disease (CMT). His research aims to help genetic therapies reach Schwann cells more effectively, advancing approaches that could one day benefit people living with multiple types of CMT.

Read the full announcement: cmtausa.org/press-release/cmta-inc-2027-fellowship/

09/25/2026

CMTA is investing $110,500 in a new partnership with La Jolla Labs to explore a potential treatment approach for CMT2A. 🔬

The project will develop an antisense oligonucleotide (ASO) designed to increase MFN1, a “backup” gene that could help protect nerve cells when disease-causing mutations affect MFN2.

This partnership brings together La Jolla Labs’ ASO expertise and the CMT research expertise of CMTA-STAR Advisory Board Chair John Svaren, PhD, to advance new treatment approaches for CMT.

Read the full announcement: cmtausa.org/simply-cmt/a-backup-gene-offers-a-new-path-to-cmt2a-treatment/

09/24/2026

Some types of CMT are lysosomal

https://www.facebook.com/share/p/19cZjDkiqT/?mibextid=wwXIfr

Lysosomal disorders can have devastating effects on patients but findings from a University of Sheffield-led collaborative study could support more precise diagnosis and help researchers identify shared targets for future treatments.

09/24/2026

Disabled people have the right to live in our own homes and communities. That right has not gone away. But the federal rules that spelled out that right in Health and Human Services programs have been struck down, with the government’s help.

Yesterday, in the Texas v. Kennedy case, a federal court approved an agreement jointly proposed by the U.S. Department of Health and Human Services and five states to remove the parts of Section 504 regulations that specify that disabled people should receive services and supports in the community rather than being forced into institutions.

This is yet another attack by this administration on the freedom and rights of disabled people. DREDF joins a coalition of disability rights organizations to strongly condemn this action. Read more here: https://dredf.org/texas-v-kennedy-final-september-2026/

What this ruling does not do is repeal Section 504 or the Americans with Disabilities Act, or overturn the Olmstead v. Lois Curtis ruling. These laws and legal authority continue to provide a right for for people with disabilities to live, work, and learn in community settings.

And if the federal government won't enforce our rights, then we will. We will push states to write Olmstead's protections into state law. We will support strong local and state enforcement. And we will fight cases that reinforce the ADA and Section 504.

Generations of disabled people fought for and won the freedom to make decisions about our lives and be a part of our communities. Together, we continue that fight.

09/17/2026

09/16/2026

This week is Disability Voting Rights Week, a nonpartisan, cross-disability, and cross-movement week of action to help make democracy accessible for everyone.

Disabled people are part of every community and affected by decisions at every level of government. Our experiences, priorities, and votes matter.

Throughout the week, we’re joining AAPD and other partners in sharing information and resources to help disabled voters know our rights, make a voting plan, and participate in the upcoming election.

Start off Disability Voting Rights Week by becoming an Accessible Democracy Defender with National Disability Rights Network and American Association of People with Disabilities.

Learn more: https://www.aapd.com/disability-voting-rights-week/

09/16/2026

Our feelings about living with CMT don’t always fit into one box.

Two feelings can be true at the same time. 💙

This CMT Awareness Month, we’re making space for the full range of emotions that can come with living with CMT. Because navigating the highs, lows and everything in between takes nerve: cmtausa.org/cmt-awareness-month/

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