Monday, June 17, 2013

Over the Top

Just opened up an envelope from Mike Lazarus and there 5 checks that put us over the top of our impossible fundraising goal of $30,000 for this year’s MRF Walk…and more is coming in. So if you were this year’s first $1 contributor (Donna Umin), the $30,000th (Paul Levis) or one of the 200 generous people in between, you have my gratitude.

And while it’s something to reach this monetary goal, what it’s being used for is what’s really impressive. Advances are accelerating.

New pharmaceuticals have recently been approved by the FDA that are in pill form (no more needles!), are better at slowing the deterioration down and with fewer side effects.   

 Dr. Steve Miller at Northwestern just published the results of a human clinical trial where by modifying a patient’s own cells, they got the body to stop attacking the myelin without compromising the rest of the immune system. With tolerance there is no auto-immune disease.

In my conversation last week with MRF Founder and President, Scott Johnson, he re-confirmed that his milestone of having an FDA approved myelin REPAIR therapeutic on the market in 6 years is the focus and it’s achievable.

My naïve optimism about getting my butt out of this wheelchair becomes a little less naïve every day.

Monday, May 20, 2013

What a Day!

It couldn't have been any better.
A very big gathering of friends.
Raised a lot of money for the MRF and more coming in.
Perfect weather.
Thank you all for walking, donating and supporting.

Sunday, April 28, 2013

It's Spring!.. Time to rally The Johnnie Walkers for our annual walk on Sunday, May 19th

This was quite a year as the pace of MS breakthroughs accelerated toward our goal of getting me and the other 2.3 million people with MS out of my crowded wheelchair.  

And while the science and fundraising are very impressive, it’s all the members of The Johnnie Walkers that makes our quest such a great story: from our first walk with Ron, Judy and Darby Anderson and Dee Downing 15 years ago, to 8th grader Ben Brandt organizing his own MRF event in junior high last fall. Along the way we’ve picked up hundreds more like Mike Lazarus who hasn’t missed a walk in decades and brings donations from the Stamford, CT healthcare community and Barb Siegel and Connie Ogorzaly leading The Lincolnshire Village Club in numerous fundraising events. Most recently, through the power of Facebook, Al Rausa has pulled together our high school friends from Emerson, NJ circa early 1970’ s, and now my daughter Christine has pulled together her high school friends from Lincolnshire, IL circa early 2010’s to get involved.

If you can’t make the trip join our group by donating online through Pay It Square or by writing a check:
The Myelin Repair Foundation
c/o Bob Gregory
10 Londonderry Lane
Lincolnshire, IL 60069

It’s tax deductible!