Dejerine-Sottas: How to help

Poll

Do you experience neuropathic pain from Dejerine-Sottas?

How to help the cause

Donate to Muscular Dystrophy Association. You can specify that your donation be earmarked for Charcot-Marie-Tooth or Dejerine-Sottas research. Though Charcot-Marie-Tooth is one of the most common inherited neurological disorders (with Dejerine-Sottas being a very rare subtype), there isn't much money going towards research at the present time.
If you object to MDA's fundraising tactics, donate to the National Organization for Rare Disorders.
Consider participating in a clinical trial. And if you aren't already, get yourself registered with The CMT North American Database. You can read more about it on the clinical trials page.
Hold your own fundraiser and donate the proceeds. The Myelin Project offers these additional fundraising suggestions:
- Organize a fundraising event at your school, college, or workplace
- Coordinate a matching donation program at your workplace
- Hold a raffle with prizes provided by local merchants
- Participate in a marathon, bike tour, golf tournament, or other sports-based fundraising event
- Invite your favorite sports team to adopt MDA as their charity for a season
- Organize a charity ball or dinner
- Consider making a gift of stock or a bequest to MDA.
Be sure to contact me with the details, and I'll list it in the News section.
Participate in distributed computing efforts to study proteins, and get others to join as well. It won't immediately benefit Charcot-Marie-Tooth or Dejerine-Sottas research, but donating your spare computer cycles will aid scientists in understanding how proteins work in the human body, and that will make myelin research much easier in the future. Here are some good programs to join:
- World Community Grid
- Human Proteome Folding Project
- Folding@Home (You can join my Folding@Home team, Team Dejerine, simply by entering 38572 into the "Team number" box.)
(Besides, the sooner they cure diseases like Alzheimer's, amyotrophic lateral sclerosis, cystic fibrosis and the like, the sooner they'll get around to us.)

How to help this site

Submit appropriate links to the Links database, particularly informational pages about Dejerine-Sottas in other languages and links to organizations in other countries.
Buy things for yourself through my Amazon affiliate links: I recommend some books about neuromuscular diseases here. I'll put the money towards my hosting bills.
Buy me some neurology textbooks from my Amazon wishlist.

How to help me

If you like what you see here, hire me to develop your website! I speak HTML, CSS, SQL, PHP, Perl, and Javascript.

Disclaimer: The information and resources on this web site are for educational purposes only. This web site and its resources have not been evaluated by a licensed physician, and are not engaged in rendering medical, pharmaceutical nor therapeutic advice or professional services. The information provided through these pages, message boards, or any links from this web site, should not be used as a substitute for professional advice by qualified doctors and/or therapists.