Deans' stroke musings: Nonprofits bring enthusiasm, innovation to drug R&D

Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Tuesday, October 30, 2012

Nonprofits bring enthusiasm, innovation to drug R&D

The paragraph and title come from a Faster Cures email.
Disease-focused foundations have transitioned from groups that raise small amounts of money through local walkathons to sophisticated investors driving drug research, writes Luke Timmerman. Encouraged by the success of the Cystic Fibrosis Foundation's partnership with Vertex Pharmaceuticals on the new drug Kalydeco, nonprofits are combining their money, advocacy and patient networks to make a difference. "When you talk to Big Pharma, it's been a bit humbling for a lot of them to look at (CEO) Bob Beall and the CF Foundation, and say 'here's a nonprofit that raises money through walkathons, and look at what they did,'" says FasterCures executive director Margaret Anderson. "It's a profound example of how the system can work.
http://www.xconomy.com/national/2012/10/29/the-new-power-players-in-drug-rd-are-wearing-fluorescent-t-shirts/
This is like what the Michael J. Fox foundation does for Parkinsons:
http://oc1dean.blogspot.com/2012/03/michael-j-fox-foundation-awards-468k-to.html

Our stroke associations are way behind and unless we get involved as a board member will that change. If you know James Baranski or any of these board members of the NSA, contact them and demand to know when they will start to follow this model.

Board of Directors

Michael D. Walker, MD, Chairman* Sarasota, FL	Phillip Gorelick, MD, MPH Chicago, IL
George Davis, Jr., Vice Chairman* Boston, MA	Daniel F. Hanley, MD Baltimore, MD
Sue Anschutz-Rodgers Denver, CO	C. Martin Harris, MD Cleveland, OH
Mollye Block, MS Ed Boston, MA	James Peake Austin, TX
Howard M. BrennerNew York, NY	Robert Shapiro New York, NY
Anastasia ColemanPalm Beach, FL	Carla Smith Ann Arbor, MI
Edward F. Cox, Esq. New York, NY	David Sproat Naperville, IL
Patricia Nixon Cox New York, NY	Tim van Biesen New York, NY
Michael Darling New York, NY
* Indicates Executive Committee Member
Honorable Samuel K. Lessey, Jr. Chairman Emeritus Hancock, NH	Valerie Ireland Chairman Emeritus New York, NY
Director-At-Large Jose Biller, MD, FACP, FAAN, FAHA Editor, Journal of Stroke and Cerebrovascular Diseases (JSCVD)

For the American Stroke Association if you know Dr.
Ralph L. Sacco or any of his board members contact them and ask when they will follow this model. Board members here are not easily found, Are they afraid?