The Myelin Repair Foundation (MRF) staff started an organizational blog to encourage more frequent and personal conversations with our supporters and people interested in our research and in improving the medical research system. We want to share with you what makes the MRF different from all other medical research organizations and also what best practices could be learned from our model.
We hope that you can then spread the message and ideas to other research organizations that may want to implement similar processes.
The MRF is also interested in continual learning and improvement, so we hope that you will engage with us on our blog about our processes. Please give us your helpful ideas, criticism or feedback that will assist us in meeting our goal of developing a myelin repair treatment for MS patients more quickly.
Inform us about other medical research organizations’s research plans and how they are approaching the cure or treatment of their disease(s).
We’ll be sharing with you stories about our organization, our research, partner organizations, our volunteers, we’ll also reveal our responses to the emails we get (keeping the senders anonymous), other times we’ll be telling you about our fundraising successes or how we spread more awareness about our organization with your help, and occasionally we will highlight current events, articles that relate to the medical research system.
Throughout, we will be responding to your comments and questions on our blog. Your feedback will help us improve our blog and our organization and help us to tell our story better.
Come join us and be a part of the Myelin Repair Foundation story and the medical research revolution!
To communicate with us you can email us at info@myelinrepair.org, but also feel free to post your ideas, suggestions or questions in the comments section of the blog. We will respond to you as quickly as possible.
This is wonderful!! Great work!
Comment by MRFsupporter — August 4, 2009 @ 11:43 am
So glad to see MRF taking a more active role on line — on Facebook, Twitter, and now with your own blog.
I’ll definitely be subscribing to your feed and I look forward to reading more about your research, news, and information.
Comment by Ann Pietrangelo — August 4, 2009 @ 12:11 pm
Welcome, officially, to the blogosphere.
It is wonderful to see how MRF is reaching out to the community and getting to know the people who will potentially be most impacted by your very important work.
Truly breaking down barriers. Congratulations and thank you.
Comment by Lisa Emrich — August 6, 2009 @ 10:28 am
I am so happy to find a websight that addresses myelin repair. I am not on any medication bacause my neurologist says those shots that I would give myself wouldn’t help. My problem is my gait. I do have a big fatigue problem but medicare does not cover provigil. Thank you.
Comment by Gail L. Payne — August 6, 2009 @ 5:06 pm
I’m very impressed. Kudos to the designers!
Comment by Fred Schwartz — August 6, 2009 @ 8:35 pm
I would like info on autologous mesenchymal stem cell for treating MS. Has any research been done to date? Any side effects? Expected outcome after treatment? Any websites that would offer info? Thanks
Comment by Cheryl — August 6, 2009 @ 9:28 pm
Cheryl,
Our scientists are working with stem cells, both mesenchymal stem cells and Induced Pluripotent Stem Cells. MRF COO Rusty Bromley created this video where he discusses the our stem cell research. http://www.youtube.com/watch?v=G5iiVwrwq-w
We aren’t, however, conducting research on autologous mesenchymal stem cells.
Justine Lam
Comment by Justine Lam — August 7, 2009 @ 9:24 am
Very excited about the new blog! Congrats to all the staff and designers of it. I’ll be subscribing to your feed and look forward to reading more information on MRF and their extensive research.
Comment by Nicole McGarvey — August 7, 2009 @ 3:32 pm
As a result of 4 yrs of Vytorin I have peripheral neuropathy. I’ve stopped taking the drug 3 mo’s ago. My question is what can I take natural or whatever to accelerate the Myelin repair (assuming the body will repair the Myelin)?
Comment by Gene Fegely — August 22, 2009 @ 4:11 pm
Gene,
The Myelin Repair Foundation is currently working to speedily develop a myelin repair treatment for MS patients. There may be applications to other chronic demyelinating diseases, but it is really hard to say so at this point in our research.
As far as I know there is no so-called “natural remedy” for myelin repair, which is why research and development is imperative.
Justine Lam
Myelin Repair Foundation
Comment by Justine Lam — August 24, 2009 @ 8:55 am
I have had ms since my late twenties
I am wondering bought the tratment for the Mylen. IOf this Rx works I am all for it lord knows I AM SICK AND tired of living like this
Comment by margaret_tull — October 8, 2009 @ 1:10 pm
I was enrolled in the research study for MBP 8298, a synththetic myelin. I was improving dramatically and then the study got cancelled. Is the MRF following up on this drug? I have several pieces of hard evidence that I was improving. I wept when told I would not be receiving any more of the drug.
Comment by Elsie Keaton — October 19, 2009 @ 10:37 am
The white coat of myelin protects my brain cells
But not my peripheral nerves.
The matter must be taken up by white coated scientists
MRF, the PNS some attention deserves
Comment by Myelin — July 16, 2010 @ 8:26 am