HNF, in partnership with Rarebase, is leading the charge in the first-ever research initiative to tackle multiple types of CMT in one project using its tech-enabled drug discovery platform called “Function.”
Author Archive
Courtney
SORD Webinar – Part 2 – Clinical Trial Update
Clinical Trial Update for SORD Deficiency – Applied Therapeutics – Dr. Shoshana Shendelman
The Key Role CMT Patients Play in Research
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.
Applying for Social Security Disability 101
The Social Security Administration (SSA) doesn’t make it easy for those with CMT to get the Social Security Disability Benefits they deserve.
What is SORD Deficiency?
Could you be 1 of the estimated 3300 patients in the US with the gene causing SORD Deficiency?
Real Talk with Joey Nicoletti
Joey’s family has a history of Charcot-Marie-Tooth, and he decided to get tested at the end of 2019. He learned at the age of 23 that he had CMT-1B and needed to adapt his way of life so that he could continue performing.
How to get genetic Testing: The CMT Genie
Trying to get a genetic confirmation of CMT can be overwhelming, and you might not have access to healthcare providers who are familiar with all the choices out there.
The Future of CMT Research
Hear from Allison Moore, Founder/CEO of the Hereditary Neuropathy Foundation about the past, present and future or research.
Setting Healthy Boundaries
Setting healthy boundaries is part of self-care and self-respect. It is being assertive without the need to be aggressive. Healthy boundaries can help us define our uniqueness and our core. Boundaries are not just about getting what we want. It’s about getting to live our lives on our own terms.
CMT&ME App Study Presented at PNS Meeting 2022
The CMT&Me real-world digital lifestyle study self-reports data from patients with all types of CMT and is collected on a regular basis in both US and Europe.
Meet Michael Watkins – Team CMT Member
Michael Watkins will participate for the 2nd time in the Leadville Trail 100 MTB race on August 14, 2022, in Leadville, CO.
Caregiver and CMT
We can’t stop CMT’s impact on someone we care about. But there is a great deal we can do to take responsibility for our well-being.
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