Dejerine-Sottas

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Breaking News from the Christopher Reeve Action Network

March 29, 2005

Filed under: Action Alerts

From StemCellular: Senators Arlen Specter (R-PA) and Tom Harkin (D-IA) and Representatives Mike Castle (R-DE) and Diana DeGette (D-CO) introduced the Stem Cell Research Enhancement Act (S.471, H.R.810) on February 16, 2005. This is our opportunity to advance positive legislation! Please take a moment to help us expand the stem cell research policy. Write your members of congress and ask them to co-sponsor the Stem Cell Research Enhancement Act.

Call for Patients: Hereditary Neuropathy and Vocal Cord Problems

Filed under: Studies and Clinical Trials

It has been known for some time that certain types of Charcot-Marie-Tooth disorder involve the muscles of the larynx (voicebox). There is reason to think that such problems may be more common than doctors have realized. The Hereditary Neuropathy Foundation is supporting a major new research effort to shed light on this problem. As part of this work, we are interested in examining patients with problems that may be related to weakness of the vocal folds (vocal cords).

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The Great Lake Tahoe Charcot-Marie-Tooth Backpacking Adventure of 2005

March 19, 2005

Filed under: Events

Dear CMTers,
Welcome to the new year. This email is your invitation to the Great Lake Tahoe Charcot-Marie-Tooth Backpacking Adventure of 2005! Or simply the LTA (Lake Tahoe Adventure).
Now, what is the LTA? An overnight backpacking trip into the Tahoe Area wilderness of California. We’ll start at the Big Meadow Trailhead and wind up and around a pine-blessed ridge to the Big Meadow creek and find a camp near flower-packed Big Meadow. We’ll make camp, hang out, eat a wonderful supper, have a fire, sleep and walk back out after the sun has warmed things up. Only CMTers may come along. I’m familiar with this country. To say the least, it’s breathtaking.

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Revised list of contraindicated drugs

Filed under: News You Can Use

The Charcot-Marie-Tooth Association has released a revised list of drugs contraindicated for people with CMT. It is available as a PDF for printing, and will shortly be made available on this site’s Contraindicated Drugs page.
Though this list was researched and prepared for people with CMT in general and not the Dejerine-Sottas subtype in particular, the drugs on this list are there because they can cause additional damage to the peripheral nerves. Be sure that your doctor includes this list in your chart.

Skin biopsies in myelin-related neuropathies: bringing molecular pathology to the bedside

Brain. 2005 Mar 17
Li J, Bai Y, Ghandour K, Qin P, Grandis M, Trostinskaia A, Ianakova E, Wu X, Schenone A, Vallat JM, Kupsky WJ, Hatfield J, Shy ME.
Skin biopsy is a minimally invasive procedure and has been used in the evaluation of non-myelinated, but not myelinated nerve fibres, in sensory neuropathies. We therefore evaluated myelinated nerves in skin biopsies from normal controls and patients with Charcot-Marie-Tooth (CMT) disease caused by mutations in myelin proteins. Light microscopy, electron microscopy and immunohistochemistry routinely identified myelinated dermal nerves in glabrous skin that appeared similar to myelinated fibres in sural and sciatic nerve. Myelin abnormalities were observed in all patients with CMT. Moreover, skin biopsies detected potential pathogenic abnormalities in the axolemmal molecular architecture previously undetected in human neuropathies. Finally, myelin gene expression at both mRNA and protein levels was evaluated by real-time PCR and immunoelectron microscopy. Peripheral myelin protein 22 (PMP22) was increased in CMT1A (PMP22 duplication) and decreased in patients with hereditary neuropathy with liability to pressure palsies (PMP22 deletion). Taken together, our data suggest that skin biopsy may in certain circumstances replace the more invasive sural nerve biopsy in the morphological and molecular evaluation of inherited and other demyelinating neuropathies.

Hereditary Neuropathy Foundation merges with CMTWorld

March 10, 2005

Filed under: Miscellaneous

The Hereditary Neuropathy Foundation website has merged with CMTWorld.

Working together as one organization provides the advantage of merging our individual strengths. Now, in addition to informative patient support, we are diligently working to inspire and fund important research. Our underlying goal is to contribute to the development of a world where CMT and related neuropathies are better understood and ultimately curable. The future however, can only be altered by the efforts of all of us in the present.

The new web site is now found at www.hnf-cure.org. All functionality of the CMTWorld.org web site, including their popular forums, has been preserved and enhanced.

Neuren And Metabolic Collaborate To Develop Range Of Nerve Repair Compounds With Support From NZ Government

March 7, 2005

Filed under: Promising Drugs

Neuren Pharmaceuticals Ltd (Neuren) and Metabolic Pharmaceuticals Ltd (Metabolic) today announced that the two companies have agreed to collaborate to co-develop Neuren’s class of Neuro-regenerative Peptides (NRPs) for the treatment of degenerative conditions such as peripheral neuropathy, motor neuron disease and repairing the brain or nerves after injuries such as spinal cord injury. The parties will jointly develop the NRPs project with all intellectual property and commercial outcomes to be equally shared.
Read more…

New Patient Magazine from American Academy of Neurology to Launch in April

March 2, 2005

Filed under: News You Can Use

Why would the leading international professional association of neurologists get into the business of publishing a magazine ­ Neurology Now ­ for patients and their caregivers?
Patients are overwhelmed and confused by the barrage of inaccurate information from unreliable sources. Neurology patients and their families are also often overwhelmed ­ and their physicians hard-pressed ­ to put the avalanche of new information in proper perspective.
For these and other reasons, the American Academy of Neurology (AAN) is launching Neurology Now in April. The premier issue will be supported by a special promotional launch during the AAN’s 57th Annual Meeting, held April 9 to 16 in Miami Beach. The magazine will be available to patients in the waiting rooms of neurologists across the United States and also by subscription for home delivery.
In focus groups sponsored by the AAN, neurologists said they needed more time and effort spent on patient education and public awareness. Neurology Now was developed in response to this need, and it will report on the latest advances in research and treatment in easy-to-read language.
“Readers can expect a health magazine that has integrity, accuracy, and balance,” said Robin L. Brey, MD, the editor-in-chief of the magazine. “Neurology Now will also foster greater energy for advocacy efforts on behalf of neurology patients.”
The premier issue will feature a cover story about actress Teri Garr who has been living with MS for several years. Each quarterly issue will highlight the latest advances in neurology research and treatment. Articles will provide tips for living and coping with disorders including Alzheimer’s disease, epilepsy, migraine, multiple sclerosis, neuropathy, Parkinson’s disease, and stroke, among other conditions.
“Family and friends are impacted significantly when someone they love has a neurological disorder, and Neurology Now will address these effects in each issue,” said Dr. Brey.
For more information about Neurology Now, visit neurologynow.com. In addition to Neurology Now, the AAN offers a book series, Patient Pages in the scientific journal Neurology, brochures, and thebrainmatters.org for patients and caregivers.
Neurology Now is published in cooperation with Lippincott Williams & Wilkins, which also publishes the leading twice-monthly scientific journal Neurology and a monthly newspaper for AAN members, Neurology Today.