Saturday, May 30, 2015

Exceeding High Expections


Not only did The Johnnie Walkers raised a record shattering $41,000, it was matched dollar for dollar by a MRF anonymous donor. Over the years we have raised over $300,000 to benefit the MRF. To say that I am personally grateful as are the scientists, volunteers (like us) and the staff members at The MRF is an understatement!

All of our donations, including the match, will fund the human clinical trial with the NIH on the repurposed drug, guanabenz and the development of protocols and assays that bridge the gap across “The Valley of Death” (which is the area between breakthroughs in the research laboratory and action by The Pharmaceutical Companies to invest millions in commercializing and FDA approved therapeutic).


Save the date, Sunday, May 22, 2016. The Johnnie Walkers will roll again.

Thursday, May 7, 2015

Unbelievable!

  • The Johnnie Walkers had quite a day for the Walk on Sunday.
  • Team Emerson (Emerson, NJ HS mini-Reunion) had quite a weekend. 
  • The MRF is having quite a year of breakthroughs in their quest to have a FDA approved therapeutic for REPAIR by 2019.

Taking full advantage of the typical (not!) Chicago weather of sunny and 78 degrees (that’s above zero) in the 1st week in May, we had a record crowd of Walkers and raised a record amounts of money on behalf of the MRF. Our goal is to raise $35,000 and have it matched by an anonymous donor for total of $70,000. As of today we are at $66,500 with more arriving daily. We’ve never been this close to our goal this early in the cycle.

A number of high school friends (we graduated 41 years ago) flew out here on Thursday. With the help of some natives, we showed them our beautiful Chicagoland. We went to Wrigley Field on Friday (it was cold). On Saturday we went on the river boat cruise and then visited The Bean (it was hot). On Sunday they merged with the loyal Johnnie Walkers team to walk 4 miles in Lincolnshire (it was great).

The MRF, in conjunction with NIH, is entering in human clinical trials for guanabenz, which has the potential to protect and repair myelin. They also helped fund a study at Case Western Reserve that showed the potential restoration of myelin after application of the active ingredient of athlete foot cream. (Scientific breakthroughs can come from the strangest places). They are leading the way for other companies that are making great progress in repair.





We’re keeping the books open for another couple months so please continue to donate generously.

Friday, April 3, 2015

Update: We Are Walking on Sunday, May 3rd

After a particularly cruel winter, we have emerged from our lairs to see The Sun and start thinking about Walking again.

Some new details:

The good news on MRF general fundraising this past year is that The Conrad N. Hilton Foundation matched all donations and exceeded their commitment. The very good news for us is we found an anonymous donor to match our fundraising for our May Walk.
 The more we stretch our efforts, the more they will stretch their match.

The neuro-protective compound, that had been previously known as MRF-008, is now identified as the FDA approved drug for high blood pressure, guanabenz. The work on this drug, as to its relevancy to MS, was done by the MRF collaborating principal investigators. You and The Johnnie Walkers helped fund this work! The MRF has entered into a cooperative agreement with the National Institutes of Health to get this breakthrough out of the lab and into the pharmacy via MS human clinical studies. Since guanabenz 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 protocols.

I’m excited about the fast start we’ve had already as depicted by the thermometer to the right.

Join us on Sunday, May 3rd, in Lincolnshire to Walk, Generate Awareness and Raise Monies. The details remain the same as those in the November post below.

Tuesday, November 25, 2014

Save The Date The Date: Our Next Walk Will Be On Sunday, May 3rd, 2015

We're getting ready to go into hibernation here in Chicago in anticipation of a particularly cold and snowy winter. However, we always set a beacon for which we focus on knowing spring and summer will return. The MRF Walk in May is that beacon.
Some things to look forward to:  

The die hard Johnnie Walker team is ready to roll with the usual suspects

 The clinical trial of the promising repair therapeutic candidate,
MRF-008, begins in earnest.

The Conrad N. Hilton Foundation is going to match our donations dollar for dollar. Our new goal: record breaking $70,000

After a great 40th high school reunion in June, my Emerson, NJ buds (The Cavos) are making a mini-reunion weekend out of the Walk. 
This will include:

Friday, May 1st - Cub game
Saturday, May 2nd - River Boat Cruise, Millennium Park, Shedd Aquarium, Deep Dish Pizza
Sunday, May 3rd - The Walk
For more details go to 
Emerson NJ Class of '74
All are welcome!

Join us and be part of our team; walk and donate on Sunday, May 3rd 2015 in Lincolnshire.  At 10:00 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!









Monday, May 5, 2014

My Favorite Day of the Year

Every one of these walks is special. Besides our very much appreciated loyal walkers, we saw the resurgence of our old crew from our single days living downtown. Our adult kids were awestruck by some of the stories challenging their perception that their parents were ever 25 years old.

We raised $24,000 so far with more coming in today. 

Keep checking back to see when we hit our goal!




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.