CMT Research Foundation Invests in Study Evaluating Potential Therapy for CMTX1
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CMT Research Foundation Invests in Study Evaluating Potential Therapy for CMTX1

Charcot-Marie-Tooth disease (CMT), though rare, is one of the most commonly inherited neurological disorders and affects peripheral nerves outside of the brain and spinal cord. Multiple CMT subtypes exist based…

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Kona Nurse with Charcot-Marie-Tooth Disease Will Circumnavigate the Globe Solo: Part 2
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Kona Nurse with Charcot-Marie-Tooth Disease Will Circumnavigate the Globe Solo: Part 2

How Jenny’s Voyage Was Salvaged BigIslandNow recently carried the story of how Jenny’s dream was almost shattered when she was sold a $10,000 used engine rather than an $8,000 new…

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Kona Nurse with Charcot-Marie-Tooth Disease Will Circumnavigate the Globe Solo: Part 1
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Kona Nurse with Charcot-Marie-Tooth Disease Will Circumnavigate the Globe Solo: Part 1

    Kona nurse Jenny Decker, 38, left Honokōhau Small Boat Harbor, Kailua-in Hawaii on June 28, 2023. A recent article in BigIslandNow announces that Jenny is ready to circumnavigate…

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“I Was Misdiagnosed with Every Disease That You Can Think of:” A Charcot-Marie-Tooth Disease Story
Author Lily Sander

“I Was Misdiagnosed with Every Disease That You Can Think of:” A Charcot-Marie-Tooth Disease Story

Written by Lily Sander By the time I was age four, I started experiencing unexplained symptoms such as severely turned in feet, which caused extreme pain and mobility issues. Terrified,…

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Rare Community Profiles: DTx Pharma is Developing Innovative RNA Therapeutics for CMT1A
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Rare Community Profiles: DTx Pharma is Developing Innovative RNA Therapeutics for CMT1A

Rare Community Profiles     Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…

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Two Studies Lead to Possible Therapeutic Approach for Neurodegenerative Diseases
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Two Studies Lead to Possible Therapeutic Approach for Neurodegenerative Diseases

  The loss of axons (nervous system wiring) has been responsible for various neurodegenerative diseases such as peripheral neuropathies, Parkinson’s disease, glaucoma, and amyotrophic lateral sclerosis (ALS). According to a…

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Editor’s Choice: Charcot-Marie-Tooth Disease Awareness, a Partner’s Accomplishment, and an African Meningitis Vaccine Campaign

Happy Friday! The days are getting shorter and the first cooling winds of autumn have started to blow. This week, we have stories on Charcot-Marie-Tooth Disease Awareness Month, a special…

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Charcot-Marie-Tooth Disease: Theophylline Boosts Myelin Production in CMT1A Mice
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Charcot-Marie-Tooth Disease: Theophylline Boosts Myelin Production in CMT1A Mice

According to a story from Charcot-Marie-Tooth News, a recent study using a mouse model of Charcot-Marie-Tooth disease type 1A produced some interesting results. The researchers found that administration of theophylline…

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HINT1 Mutations Cause Neuromyotonia in Greek Patients with CMT
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HINT1 Mutations Cause Neuromyotonia in Greek Patients with CMT

According to Charcot-Marie-Tooth News, researchers have associated HINT1 gene mutations with neuropathy in Greek patients with Charcot-Marie-Tooth disease (CMT). In the past, HINT1 was linked to CMT in central and southeastern Europe. However, researchers…

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The Today Show: Alan Jackson, Legendary Country Singer, Reveals His Ten Years with Charcot-Marie Tooth Disease (CMT)

Although Jackson, age 62, has had CMT for ten years, he only divulged his illness this month. According to an article on eathis.com, Jackson chose a recently aired segment of…

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