Did you happen to read Lisa Emirch's extensive post on AMPYRA - http://www.*************.com/multiple-sclerosis/c/19065/102100/ampyra
It's got a good historical overview of the drug development process -- it took over 40 years to develop! Yikes.
Also has some personal stories from folks that were taking AMPYRA/Fampridine.
Patient-centered online communities like MedHelp are empowering people with information, tracking tools and more resources on current treatment options and that are changing the power dynamics in the health care system.
The Myelin Repair Foundation featured a blog post on this topic today.
Please post in the comme...
Thanks for the further clarification on the drugs for the different types of MS.
Laura -- No offense was taken. My access to the scientists is rather limited since they are all busy in their labs. I will bring up the question to the COO, Rusty Bromley, later today. Then I'll post his answer here.
Thanks so much Laura and Jen for all this information. This is really interesting to learn about.
So it sounds like CRAB drugs don't really do much for remyelination... which is why the MRF is conducting its research on myelin repair treatments (doh!)
Another question, when someone gets to the point of SPMS are they usually taken off of CRABs? If ...
Please see this recent article "Remyelination capacity of the MS brain decreases with disease chronicity" http://ow.ly/dO7D
I have a question from someone on Twitter about "how the different modulating drugs like avonex or betaseron or rebif and how they effect the remyelination capacity that is lessened by chronicity."
Thanks for letting us use your brain scans! I think the profile shot might be the best one for the t-shirt. Will let you know how the design work goes. :)
If anyone else wants to submit their brain scan for a t-shirt let me know, too!
A supporter of ours wrote a poem about myelin, to help spread the word about this v. important substance in our nervous system.
You may will weep for hiselin or herelin
You may even weep for theirelin
But until it's yourelin
You truly can't fathom the loss of myelin.
We were thinking of imposing this poem on top of a black and ...
Julie Stachowiak, Ph.D from About.com explains why she thinks that researchers may be on the wrong track due to the animal models they rely on for research:
"The thinking goes like this: the animal model of multiple sclerosis (which is used for treatment and drug development) is very different from the human experience of multiple sclerosis. In the a...
Sharon Begley of Newsweek discusses some of the barriers in the medical research system and advocates for President Obama to appoint an NIH director that will make this hers/his priority.
Read the article here: http://www.newsweek.com/id/200599
The Myelin Repair Foundation is gathering signatures for a new petition, Appoint an NIH Director Who Will Ma...
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