The Myelin Repair Foundation is unique. They are doing the validation work which large companies are not willing to do. In the past year, they have received a great deal of attention and recognition for the work they are doing. Here is a new video which explains a bit of their philosophy and work while introducing us to some of the individuals and scientists involved in finding the key to myelin repair.
Of course this video is also a plea for financial support. Visit their website for more information regarding the Foundation and their work.
Showing posts with label Myelin Repair Foundation. Show all posts
Showing posts with label Myelin Repair Foundation. Show all posts
Thursday, August 19, 2010
Sunday, December 6, 2009
Spin!! - Art Auction to Benefit Myelin Repair Foundation
We've talked about The Ride Project and Courtney's commitment to donate $1,000,000 to the Myelin Repair Foundation through sales of limited edition photography prints focusing on things which move.
We've talked about the Myelin Repair Foundation.
This Tuesday through Friday, December 8-11, 2009, the Myelin Repair Foundation is holding an online auction featuring the cycling photograph which started it all!!
"Spin"
Courtney says...
On top of this commitment ,I am donating this print: (http://www.therideproject.com/nggallery/page-5/image/69) for the online auction starting next Tuesday. The photograph that I’ve chosen to donate is titled “Spin.” This image is all about motion, energy and passion. “Spin” inspired The Ride Project, which combines my passion for cycling and photography and continues to motivate me to move forward with my fight for a cure for multiple sclerosis.
More Details from the MRF:
The winner of the auction will receive this limited edition 12 X 18 photograph matted, signed, numbered and framed to 18 X 24 (white mat, black frame). This is the perfect present for a loved one that is passionate about cycling or loves photography.
The Auction begins Tuesday, December 8 at 8AM Pacific Time. It will end Friday, December 11 at 5:00 PM Pacific Time.
This will allow enough time for the framed and signed print to be delivered for a Christmas or holiday gift.
The starting bid is $250 and each bid needs to be higher by minimum increments of $10. So if someone bids $276, the next bid needs to be $286, $296, or $306 and so on.
The estimated retail value of the framed print is $500. For the winning bidder, the amount paid in excess of fair market value may be deductible as a donation in support of the Myelin Repair Foundation. There will be no additional shipping costs (courtesy of Courtney Carver.)
To bid, comment on this blog post (http://blog.myelinrepair.org) with your bid amount and enter in your full name and email address where we can contact you, otherwise your bid will be void. We will periodically update the blog, our Twitter account, and Facebook Fan Page with the top bid amount.
Reminder: Bidding does not start until Tuesday morning, December 8th. There will be a special text field where you can enter your bid.
Please spread the word:
forward it! email it! blog it! tweet it! facebook it! sing it! write it! say it! dance it!
BIDDING DOES NOT START UNTIL TUESDAY, DECEMBER 8th!!
Saturday, December 5, 2009
Myelin Repair Foundation Supporters
After looking into where the money flows within prominent MS organizations last April, I met Justine Lam who is responsible for the Myelin Repair Foundation's online presence. We've become friends. When Justine asked if I could contribute to a holiday fund-drive video, I said sure. See what some of these folks had to say.
Be sure to stay tuned, because there is more news and events related to Myelin Repair Foundation coming in the next few days.
Be sure to stay tuned, because there is more news and events related to Myelin Repair Foundation coming in the next few days.
Thursday, October 22, 2009
Promises Made, Promises Kept: Myelin Repair Foundation
The Myelin Repair Foundation set out to raise $25,000,000, find targets for myelin repair, and even license a target in a brief five years. They are $20,100 shy of meeting each goal within the time frame established. Watch this video produced to celebrate this accomplishment and read the message provided below.
From our long-time supporter and volunteer Area Director, Bob Gregory:
I'm a keeper of lists; a setter of goals, a manufacturer of timetables. Add to this a great deal of impatience and inability to accept the status quo and you have the makings of great frustrations. So when I was diagnosed with multiple sclerosis in 1990 I fell into old habits. I was going to be back to my marathon running ways by 1995. Or by the time my daughter went to school in 1998. Or by the time the millennium turned in 2000. Each time reluctantly pushing out my arbitrary timetable with no real logic behind it.
Then I had dinner in Chicago in December 2004 with Scott Johnson and Rusty Bromley. They talked about pulling together the top researchers in some of our most valued universities; who didnt know each other except by reputation and have them collaborate and thereby sacrifice their most valuable asset: the proprietary use of their ideas. And by the way were going to raise $25 million and license a target all in 5 years.
My heart said yes. My brain said no way. But there was a plan!
As you can see from this report, it worked: Promises Made, Promises Kept. Read the report here: http://myelinrepair.org/documents/Annual_Report2004-2009.pdf
From our long-time supporter and volunteer Area Director, Bob Gregory:
I'm a keeper of lists; a setter of goals, a manufacturer of timetables. Add to this a great deal of impatience and inability to accept the status quo and you have the makings of great frustrations. So when I was diagnosed with multiple sclerosis in 1990 I fell into old habits. I was going to be back to my marathon running ways by 1995. Or by the time my daughter went to school in 1998. Or by the time the millennium turned in 2000. Each time reluctantly pushing out my arbitrary timetable with no real logic behind it.
Then I had dinner in Chicago in December 2004 with Scott Johnson and Rusty Bromley. They talked about pulling together the top researchers in some of our most valued universities; who didnt know each other except by reputation and have them collaborate and thereby sacrifice their most valuable asset: the proprietary use of their ideas. And by the way were going to raise $25 million and license a target all in 5 years.
My heart said yes. My brain said no way. But there was a plan!
As you can see from this report, it worked: Promises Made, Promises Kept. Read the report here: http://myelinrepair.org/documents/Annual_Report2004-2009.pdf
Tuesday, May 5, 2009
Myelin Quiz: Are You the Myelin Man!!
Justine from the Myelin Foundation @MRF_Justine asked me to take "The Myelin Quiz." So while I'm exploring that, I'll jump back here to take notes. Here goes.
The link she provided took me to "The Myelin Quiz" on Facebook (which is an application).
After I hit the Submit Button, Facebook brought me to a screen prompting me to choose 4 friends to send The Myelin Quiz! Request to. I opted to skip this step for the moment and to click on the very small "continue to result" statement which is hiding below the "Processing your Quiz Result" near the top of the page.Are you a Myelin Man or just a Node of Ranvier? Test your knowledge about myelin.
Perhaps I will go back and request that ALL of my MS friends on Facebook take this quiz. Be forewarned. LOL. But first, let's see how I did. There were a few questions where I guessed since I didn't have a clue.
WhooHoo!! I am Myelin Man!!
You are Myelin Man!
You know everything there is to know about myelin. Seriously. You should get your Ph.D. (if you don’t already have one) and join a research lab at your nearest university immediately. Congratulations! Explanations for all answers: http://myelinrepair.org/myelin_quiz
Next you are given the opportunity to publish your results to your Facebook wall and friend's home pages. This is a step which can be skipped, but I thought "sure, why not. It will provide some exposure to the Myelin Foundation."
I also added the following commentary:LOL. I combine calculated guesses with known answers and look where it got me. I feel so smart. ;pNow I'm looking at the Quiz page where you can choose other quizzes to take or to "make your own Quiz." I chose to add my results to my Info Page instead.
One observation I have is that the.....
Explanations for all answers: http://myelinrepair.org/myelin_quiz
....does not contain a live link. I don't know if this is possible to change, but it would be useful to encourage more people to visit the Myelin Foundation's website.
Looking through the answers and explanations, I see that I missed two questions. Hmmmm.....how did I become "Myelin Man" if I guessed incorrectly. Puzzling.
I might go around not knowing that "Layers of glial cell membranes" is the substance of which myelin is comprised. Now, that would be embarrassing during normal dinner conversation.
From the same landing page on the MRF's website you are offered the opportunity to:
Register for our e-NewsletterLearn more and keep up-to-date on the progress of research on myelin repair, the next REAL hope for treating Multiple Sclerosis.
Tell Ten Friends and FamilyTake a moment to tell ten friends and family in your personal and professional networks about the Myelin Repair Foundation and how myelin research is crucial to curing MS. Encourage them to register at our web site to learn more about our work and share what they learn with others.
Join Our Facebook Causes CampaignShow your support on the social networking site, Facebook. You’ll be taken to the Facebook website where you can either log in to your existing Facebook account or create a new account in order to join our cause. Our Myelin Repair Foundation Causes page allows you track your impact in recruiting other members and in raising money for myelin repair research.
Donate $10 Right NowShow your support for myelin repair research by making a donation.
~~~~~~~~~~~~~~~~~~~~~Overall it was a fun experience and one which I believe will help to spread awareness of Myelin Repair Foundation and the issues of research needed for demyelinating diseases. Thank you Justine.
Wednesday, April 22, 2009
Who Spends Money on MS Research?
Now that many communities around the country have had their MS Walks, I thought this would be a good time to take a brief look at where the funding goes. The National MS Society has the largest budget BY FAR and contributes the greatest amount of funds to MS Research. (click on boxes for larger images)
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The Multiple Sclerosis Association of America and the Multiple Sclerosis Foundation are service-oriented organizations and do not contribute to MS Research. They both have great programs to assist patients with specific needs.
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The Myelin Repair Foundation and the Nancy Davis Foundation contribute their funds exclusively to MS Research. The Myelin Repair Foundation spent $665,553 for administrative and fundraising costs, while the Nancy Davis Foundation spent $814,151 for the same.
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The Accelerated Cure Project and the Montel Williams MS Foundation contribute funds to education, awareness and MS Research. Neither organization provides financial assistance to patients, however the Accelerated Cure Project makes a great deal of information available to patients through their website, news forum, and extensive database.
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The numbers presented above come from the Fiscal Year 2007 which ends on September 30, 2008 in most cases. Fiscal Year 2008 has yet to end.
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