Progress!

[kwarendorf]

Promissing news from my favorite MS research facility and my favorite neurologist!

http://www.fox5ny.com/news/33677697-story

Kyle

[Joiedecour]

that's an awesome letter, Kyle. it's going to be very interesting to see if they give you an explanation. seems like a no brainer to fund research that seems to very promising....

[Corriel]

HI Kyle, I read this article recently and I just thought of it.

https://beta.mssociety.ca/news/article/collaborative-network-planning-awards-granted-as-part-of-22-million-global-effort-to-end-progressive-multiple-sclerosis

Corrie

[essdipity]

I sometimes see an NP who is also a high official at the NMSS. this past July I mentioned the Wheelchair Kamikaze to her, and she said they do read his blog posts, which have dealt with the current issue in the past.

We certainly did not really discuss this at all, but she is aware and sympathetic.

ess

[4happygnomes]

I hope they respond, better yet...I hope they reverse their decision and get behind this research!  

Wouldn't it be grand if you could ask them to cut you a check for the $60,000+ dollars you have personally raised on behalf of MS and choose where to put those funds?  Sufferers should have a say, especially when they have put the time and energy into raising money toward finding a cure/relief.  

Karen

[HVAC]

I like your letter. I am eager to here their response.

[Corriel]

That's disheartening to know that the NMSS has denied the funding.

I hope you have success in helping the decision get reviewed (and changed).

C.

[kwarendorf]

Marc spoke with Dr. Sadiq about this 2 days ago and Sadiq was understandably reluctant to start a war with NMSS. So he didn't name names:-) here is the email I just sent to Cyndi Zagieboylo, the CEO at NMSS. I copied most of the Leadership team. Their email addresses can be found here:

http://www.nationalmssociety.org/About-the-Society/Leadership/Senior-Leadership-Team

Dear MS. Zagieboylo,

I am writing to learn more about the research grant awarding process at NMSS.

Four years ago I was diagnosed with secondary progressive MS. Since that time I have been a supporter of NMSS. Through a combination of WalkMS and BikeMS events I have raised over $60,000.00 for the society. I look forward to continuing my support of the all the work you do.

I was diagnosed by, and am under the care of, Dr. Saud Sadiq at the International MS Management Practice. IMSMP is the clinical partner of the Tisch MS Research Center of NY. It is a Tisch grant proposal that motivated me to write.

I have learned that Tisch submitted a proposal for funding of its research into the effectiveness of mesenchymal stem cell-derived neural progenitors in repairing damage caused by MS. This request has been denied. The research is the only FDA approved research of its kind. While still in its early stages, six of the nine participants who have received treatment have shown significant improvement. The potential for reversal of existing damage is a cause for hope among those of us with progressive forms of the disease.

As heartening as the news from Tisch is it is disheartening that NMSS has chosen not to provide essential funding for Phase 2 of Dr. Sadiq’s research. The Tisch study is FDA approved and Phase 1 has shown real results in real people. I would like to learn more about the NMSS’s decision not to financially support this important work.

Thanks in advance for your reply.

Kyle Warendorf

[savvycs]

Thanks kyle. Do you suggest we write to the board members?

Gina

[kwarendorf]

ess-

I am going to ontact the NMSS and ask for information about their denial of funding, I've raised over $60K for them over the last 4 years and sure would like to hear their reasons. I've written Marc (Wheelchair Kamikaze) and asked if he has any specifics,

I will keep you posted.

Kyle

[essdipity]

http://www.wheelchairkamikaze.com/2015/10/video-promising-fda-approved-stem-cell.html?utm_source=feedburner&utm_medium=email&utm_cam
paign=Feed%3A+WheelchairKamikaze+%28Wheelchair+Kamikaze%29

ess

[ConfirmedRachel]

I saw this too Kyle, interesting.

Really not happy with the new community design though, it's so formal and doesn't encourage friendships to be built when you can't see who has asked what or commented :-(