This Charcot-Marie-Tooth Disease Patient is Circumnavigating the Globe Solo
Jenny Decker began her solo voyage in her 1983 Bristol 35.5 Tiama from Honokōhau, Hawaii on June 28, 2023 (see Patient Worthy articles Part 1 and Part 2.) Jenny hopes…
Jenny Decker began her solo voyage in her 1983 Bristol 35.5 Tiama from Honokōhau, Hawaii on June 28, 2023 (see Patient Worthy articles Part 1 and Part 2.) Jenny hopes…
Cooper Meshew was diagnosed with Charcot-Marie-Tooth (CMT) disease at a very young age. The disorder affects one person in about 2,500 individuals. In fact, Cooper has an extremely rare variant…
Written by Miron Hall Because CMT is a rare disease, it often receives less attention and funding than more common medical conditions. Without adequate resources, researchers struggle to develop effective…
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…
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…
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,…
Imagine being Rowan Marshall, a seven-year-old first-grade student with a debilitating rare disease. Rowan made it through the new student formalities. He is doing well at school. Now he faces…
Jenny Decker’s disease, Charcot-Marie-Tooth (CMT), is named after the three doctors who first discovered the disease in 1886. CMT is a progressive neurological disease that affects approximately 2.6…
According to a story published on Charcot-Marie-Tooth News, a recent real-world study highlighted the impacts and symptoms of Charcot-Marie-Tooth (CMT) disease type 1A. The most common form of the illness,…
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…
For as long as he could remember, Georgie Davey had one word that he thought described himself: “clumsy.” When he was a child, Georgie would frequently trip and fall. He…
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…
If you are interested in learning about CMT or are even a little curious, this article will help to shed some light on this rare disease. You are invited by…
According to a story from Charcot-Marie-Tooth News, the Global CMT Research Convention is set to take place in Cambridge, Massachusetts on September 16-17, 2022. Organized by the CMT Research Foundation,…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
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…
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…
Alan Jackson has been a big part of the country music scene for a long time, with songs like Remember When and Livin' On Love. Recently, he revealed to his…
It's no secret that genetic mutations can alter the way our bodies - and bodily processes - work. For example, explains Charcot-Marie-Tooth News, GARS gene mutations stop protein production in ribosomes. These…
September is Charcot-Marie-Tooth disease (CMT) Awareness Month! The Charcot-Marie-Tooth Disease Association has put together 5 different ways you can help spread awareness of this rare disease this month. The Association…
In medical research, researchers often use a variety of non-human models to expand their understanding of various diseases or potential treatments. For example, mice models, or non-human primates, are frequently…
In case you missed it - a news release from biopharmaceutical company Pharnext SA ("Pharnext") shared that on July 12, 2021, the first European patient enrolled in the Phase 3…
A recent study has examined what risk factors exist for patients diagnosed with myotonic dystrophy, the most common of all muscular dystrophies. This is a progressive, hereditary condition. Regarding cardiac…
Partnerships within the medical community play a huge role in advancing research and developing treatments. According to Charcot-Marie-Tooth News, a new partnership has formed between Dr. Alessandra Bolino, PhD, the…
Charcot-Marie-Tooth disease (CMT) is associated with a number of genetic mutations. In fact, the different mutations signify specific CMT subtypes, such as CMT1 or CMT3. According to Charcot-Marie-Tooth News,…