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 $30,000^th (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.

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.



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 8^th 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!

 

A Wild and Successful Day!

The Johnnie Walkers rallied in Lincolnshire yesterday for another successful day of fundraising, raising awareness and just having a good time.  We kicked off our 4 mile walk at 10:30am and at Noon as the last of us were completing the route and turning in to the drive way the thunder clapped and the skies opened up.

We hustled the tables and chairs, food and drink, kids and dogs into the garage, under the breezeway and onto the porch and picknicked while the deluge raged around us.

We've raised just shy of $27,000 so far with more pledged to come in.

Keep checking back here and watch us hit our goal in the next weeks.

Emerson Cavos Expand The Johnnie Walkers

Through the magic of Facebook, I have reconnected with a lot of long lost friends from Emerson NJ High School, circa 1974 (you do the math!) We were the Emerson Cavaliers or The Cavos.

Al Rausa has been particularly active in re-connecting us all and specifically interested in our cause. He's now taking it to a new level by organizing Team Johnnie Walker East:

I would also like to support one of our classmates who is battling MS. Bob Gregory graduated with the Class of 74 and was diagnosed with MS in 1990. Due to an unusually fast disease progression he was in a wheelchair by 1995. I have stayed in touch via email and Facebook, he has never lost his sense of humor and courage. So, at the party on Saturday,May 18th, I will have a raffle of Louisiana food and Artwork that I am bringing back in order to raise funds for Bob’s cause (http://​msjohnniewalkers.blogspot.com/). Please take a moment to checkout his website, watch the video, send him an email and help me support a fellow Cavo.

So we have quite a team; The Cavos, our loyal local walkers, our swat team who flys in, The Village Club, The MRF members and the vast countrywide network.
Makes you believe anything is possible.

Join Us on Sunday, May 6th 2012

“The Myelin Repair Foundation’s unique research approach, which facilitates collaboration among leading neurologists, has sped up the discovery process to where we are today; moving an MS therapeutic closer to the patient…” Dr. Stephen Miller, Northwestern University.

You have a front row seat to the accelerating shift in how multiple sclerosis is understood: from a chronic debilitating disease with vague hopes for future breakthroughs (my experience at diagnosis in 1990) to a manageable condition where therapeutics stop the downward spiral of deterioration and actually repair the damage.

What makes the MRF unique?


Join us and be part of our team to keep the ball rolling; walk and donate on Sunday, May 6th in Lincolnshire. At 10:30 am we will start a 4 mile neighborhood walk, followed by an afternoon of camaraderie and a backyard picnic. Ask your friends to donate.

If you can’t make the trip join our group by donating online through ChipIn or by writing a check:
The Myelin Repair Foundation
c/o Bob Gregory

10 Londonderry Lane

Lincolnshire, IL 60069

It’s tax deductible!

Join The Johnnie Walkers and Walk For MS Research on May 22nd

Anybody who steps foot into our house gets dragged downstairs to watch The Myelin Repair Foundation’s latest video: Making Connections for a Cure I’ve watched it a hundred times and I still get choked up…but not for the reasons you might think. The people with MS who are spotlighted are very compelling. I can relate to their overwhelming desire to get their lives back and walk their daughters down the aisle. However the part that gets to me is what Mike Gresser, MRF’s Chief Scientific Officer and Scott Cook, Co-Founder of Intuit and MRF Patron say. They both articulate that what the MRF is doing is a whole lot bigger than an individual, a specific disease or even a single noble cause. The Accelerated Research Collaborative model is the future of medical research--whether it is applied to MS therapies, other autoimmune diseases like Type I diabetes and rheumatoid arthritis or the goals of The American Cancer Society and the Michael J. Fox Foundation. This is where, we, The Johnnie Walkers Team, want to spend our energies; raising awareness and funds to repair the damage caused by MS. Join us and be part of our team; walk and donate on Sunday, May 22nd in Lincolnshire. At 10:30 am we will start a 4 mile neighborhood walk, followed by an afternoon of camaraderie and a backyard BBQ. If you can’t make the trip join our group by donating online through ChipIn or by writing a check:
The Myelin Repair Foundation
c/o Bob Gregory

10 Londonderry Lane

Lincolnshire, IL 60069

It’s tax deductible!

Ask your friends to donate.

Every year I say there’s no way we can surpass last year’s numbers but this year I think we just might. The Village Club of Lincolnshire has selected MRF as the beneficiary of their philanthropic efforts and many of their members want to join our extremely loyal locals on the 22nd. More out of town people are saying this year they’re going to make it. Two of our rock star scientists, Drs. Steve Miller from Northwestern and Brian Popko from the University of Chicago and their families are returning. Our goal is to raise $30,000. If we exceed this goal, we are going to request that the incremental funds go to the collaborating scientists’ summer intern programs.

Thanks for your continued support!