From the Hereditary Neuropathy Foundation newsletter: a newsflash that offers a glimpse into the timely and informative content you’ll find on our site this month, including research projects that hold promise for CMT patients, an article on groundbreaking pain-care legislation, two new profiles of amazing people living with CMT, an interview with a prominent LA orthopedist and an article about one of the country’s leading centers for genetics testing.
Do you experience neuropathic pain from Dejerine-Sottas?
January 26, 2006
November 10, 2005
Wow! The interest in our newly released patient information booklet continues. If you are a full member and have not received your copy yet, please be patient as we are now sending them out continuously. As we have already announced, all members who have submitted the minimum of a $35 donation, are receiving a copy of this high-quality booklet for free, in addition to having full access to our on-line articles.
We are experiencing a high demand of requests for extra copies to be sent to physicians and other 3rd parties interested in CMT, therefore we have set a nominal price of only $10.00 per copy for any additional copies ordered beyond the free copy to members. To order extra copies please forward checks payable to our office at HNF, P.O. Box 287103 New York, NY 10128. Please remember to include your clear delivery instructions, i.e. name and address of the recipient.
…Following the footsteps of CMTWorld.org, who more than a year ago joined forces with HNF, CMTUS–-which brings along a dedicated group of CMT patients/on-line users–will now also stand by our side as we all move forward for the common benefit of CMT patients.
June 15, 2005
From the HNF email newsletter:
The Hereditary Neuropathy Foundation has recently made changes to its website. Informative areas such as the FAQs, newsflash articles, e-newsletter and the forum discussions will remain available as no-cost interactive features allowing individuals to communicate with one another world-wide. The section housing articles however is now offered as a membership feature accessible through a donation-based subscription registration at a minimum of $35.00 per year.
From Genetic Engineering News:
The Myelin Repair Foundation today announced that its collaboration of five of the world’s leading neuroscientists has identified three new “switches,” or signals, operating in the brain and spinal column that appear to turn on and off the nerve cell’s ability to repair myelin. Myelin is the protective coating surrounding nerve cells that is damaged by MS. The scientists’ findings are a critical first step in understanding myelin repair and its role in treatments for MS and other demyelinating diseases.
This discovery focuses on myelin in the brain and spinal cord and not the peripheral nerves, so though it’s not directly applicable to Dejerine-Sottas research, it’s another step in the right direction.
March 10, 2005
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.
February 21, 2005
There’s an interesting article on the BBC News site about the World Community Grid project, a distributed computing effort to study proteins and their role in the human body. The hope is that a better understanding of the roles certain proteins have will lead to the development of cures or better treatments for diseases like cancer, HIV/Aids, and malaria.
I’ve been involved in similar distributed computing efforts for awhile now, and convinced my family and friends to join, because I believe this project or others like it will someday benefit myelin protein research. It costs nothing for the computer owner, generally requires no maintenance, and doesn’t interfere with use of your computer; and the scientists not only save money that they’d otherwise have to spend on powerful computers, but–more importantly–they save years of time.
January 27, 2003
Here’s a site that will be of interest to the ladies: Beauty Ability. I bought a copy of Wheelchair Fashion 101 a few months ago, and thought it quite good. I’m glad to see such books are starting to emerge, even if the major dead-tree publishers still don’t recognize their value. (Warning: breast implants and sex are discussed graphically, with pictures. Ok, I’ll wait here while you go click on the link…)
My personal beauty tip: only buy Nice Shoes. Hey, it’s not like I have to walk in them; they’re only there for show. So I get the good-looking ones that would kill a walkie. (Even though I’m small, I’ve found a good source: Cinderella of Boston!)
January 23, 2003
The Muscular Dystrophy Association is accepting applications for both development grants and grants to support research on treatments for muscular dystrophy and related diseases of the neuromuscular system. Generally, development grants are intended to expand the number of researchers in the field by supporting investigators who, under the guidance of a senior researcher, will be given the flexibility to conduct a neuromuscular-disease research project.
- Who is eligible: researchers at colleges and universities, or other medical and research institutions, who have a doctorate in medicine, science, or philosophy. Applicants outside of the United States are eligible for research grants if, in addition to the above criteria, their country of residence has inadequate sources of financial support for biomedical research or their project requires the collaboration of an American investigator supported by the association. Applicants for development grants must have at least 18 months of postdoctoral training.
- Deadline to request applications: June 15. Deadline for applications: July 15.
- Total amount to be awarded and number of awards: not specified.
- Amount of individual awards: up to $45,000 per year for development grants; there is no limit on funds for research grants. All grants are for one to three years.
View the full text of the announcement on the association’s World Wide Web site.
December 1, 2002
Today is World AIDS Day, and I’m participating in Link and Think in observance. If you ask me, they can’t cure AIDS (and cancer, and diabetes, and leukemia, etc.) fast enough… some of these diseases make Dejerine-Sottas look like a walk in the park.
November 17, 2002
I love cool science stuff like this. It’s a double helix bracelet from Carolyn Forsman Conversation Piece Jewelry, available online or in the MoMA Design Store. Available in silver, hematite, rainbow, and metallic red, fuchsia, royal, lime, and jade. (Disclaimer: I am not affiliated with this site in any way, though I wish I was.)