Wednesday, April 9, 2014

Circle 2 Dates on Your Calendar: May 4, 2014 & May 4, 2019



It’s time to rally The Johnnie Walkers for our annual Walk on Sunday, May 4th to raise funds and awareness of the research at The Myelin Repair Foundation.

The MRF has set the goal of having an FDA-approved REPAIR therapeutic on the market by Saturday, May 4th 2019. That’s in 5 short years! The MRF has met all their milestones on their timeline since its inception in 2004.
You have a front row seat to medical history

“Given the fact that remyelination has quickly become the new vanguard for Multiple Sclerosis treatment”

It’s been quite a year already.  In January, a new partnership was created with The National Institutes of Health to develop a clinical trial for a compound called MRF-008. This compound is a generic drug that the MRF academic research consortium identified as a potential candidate to protect and repair myelin in MS patients. Since MRF-008 is already FDA-approved for another disease indication, the MRF and the NIH see a tremendous opportunity to investigate the repurposing of this drug with its known safety profile. Repurposing takes years off the clinical trial protocol.

Join us and be part of our team; walk and donate on Sunday, May 4th in Lincolnshire.  At 10:30 am we will start a 4 mile neighborhood walk,starting and finishing at our house. Then spend the afternoon of camaraderie and a backyard picnic with us. Bring your friends.

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!

Here's MRF's latest video:
 

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!


 

Monday, May 7, 2012

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.


Thursday, March 29, 2012

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.

Monday, March 19, 2012

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!