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.

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!