Peter Wilderotter and Susan Howley from CDRPF

Peter says the big new thing is the establishment of CR foundation satellites around the USA. It will start in here in Chicago.

Our knowledge manager Sam Maddox is even wearing a suit, so we know that this must be an important occasion. He's acknowledging lots of local people here in the room who are already part of the program . . . also recognizing Marilyn, Sue, and Betheny. (Hey, Peter, you must get to know Donna!)


The path that got us here is not going to get us were we need to go . .. there's a quote up on the screen: "For everyone who thought I couldn't do it, for everyone who thought I shouldn't do it,for everyone who said I didn't ahve it in me, see you at the finish line!"

Dana said that having sci enter your family was landing on the moon without a map.
Mike Mangianella was in charge of sorting the mail, and there were 3 bins. The normal people, the people who might be crazy, and the people who were definitely crazy. (Not exaggerating here. People sent him kryptonite so he could be healed.) One of the middle bins got the letter from Joan Irvine Smith offering to send a million dollars because she was so pleased that he didn't shoot the horse that threw him. Her money started what became the RIRC.

Slide up about the history:
1982 was the beginning. Scientific dogma was that the cord could not be repaired. Patients were seen as a tiny isolated who had to stay on the sidelines. There was no awareness, and no collaboration.

Their thought at CDRF was that we can't get to the finish line on the same path that got us here. The path to the future has to be strategic.

Who is our community? 1,275,00 Americans living SCI, plus the newly injured, the families, caregivers, and friends, the health care providers, the scientists, and society at large.

He's introducing Susan Howley. The head of the ACLU is not a lawyer. How can that be? The constitution is too important to be left to the lawyers. And sometimes the science is too important to be left to the scientists. Susan has become the person in charge of not leaving it to the scientists.

She gets up to thank Peter and says that she just left the most gorgeous beach with the best weather ( a joke about the rain we have here) to be with us. She started working in this field in 1983 for a small family research foundation that started in New Jersey.

They gave $25,000 each to a couple of Columbia scientists who were into brain research.

So, while we're still an infant field, we've come an extraordinary distance in the last 26 years.

She wants to tell us how the Reeve foundation funds scientists; she's a herder of cats.

There are a couple of board members who have got their fingerprints all over the systems we have in place. It's a stepwise, dynamic continuum.

First is individual grants, which go to new knowledge and new talents. They funded Stephen Davies' original work on astrocytes, for example.

Next is an international research consortium, which is a multi-disciplinary collaborative approach to SCI repair.

Next is the NeruoRecovery Network, which delivers activity-based rehabilitation interventions to SCI patients

Finally, the North American Clinical Trials Network.

How do individual grants work? the mission is to cast a wide net and fund the development of treatments for paralysis and the other dysfunctions that result from sci

since 1982: a total of 610 labs funded worldwide with $47 million
since 2002: 202 projects with $25,000,000
They look for quantifiable ROI, including publications, subsequent funding, trainees, patents

Their grants cover the whole spectrum. neuroprotection, regeneration, growth inhibition, remyelination, axon guidance, rehabilitation, dysfunctions like bowel, bladder, pain and so on.

They hold a spinal cord symposium to promote dialgue between Reeve'sindividual grantees and members of the sci community, foster exchanges of data and ideas between the two groups, and facilitate collaborations among the researchres.

They also give small network collaboration grants, which are highly leveraged funding that supports collaboration.

The member labs of the consortium include the Miami Project, UCLA, Cambridge, The Salk Institute, State U of New York at Stony Brook, University of Zurich -- the core labs are The Salk Institute and UC Irvine.

In the Neuro REcovery Network, they create standardized, evidence based, activity based therapies. There are centers in Louisville KY, Philadelphia, Houston, Atlanta, Columbus, OH, Boston, and WEst Orange, NJ. They're also adding what they call Facilities (as opposed to centers), and one of them is even west of the Mississippi!

The clinical trials network is about getting to the bedside. This morning someone asked why there aren't more clinical trials . . . she says there have been trials, but they haven't worked. One problem with these earlier trials was that we had very clunky outcome measures -- they may have been effective therapies, but the outcomes were not measured very well.

The centers are in Texas (4), Virginia, Maryland, Ontario, Kentucky, Florida, Pennsylvania, Washington DC

Showing a complicated bar graph that measures number of research projects against project start date, with each bar broken into 9 possible segments. What jumps out is a huge drop in projects funded in the year 2006, along with the disturbing size of the segments that indicate "complications" in projects. (I'd love to see the data behind this graph.)

Peter is back . . . so, how do we get to the future?

1. The power of one (alliance-building, collaborations, elimination of duplicative efforts)
2. The power of the truth (striaght talk, expectation setting, replacing hype with hope)
3. The eternal mystery of the world is its comprehensibility (Albert Einstein) We need rigorous science and clinical trialing, along with a multi-faceted approach to repair. There's no magic bullet, no magical scientist or doctor, and no quick fix. We need strategic, science-driven decision-making.

He's quoting Ted Kennedy: The dream still lives . . .

He says that Sue and Marilyn and Betheny told him about going to meetings with people who were in the community but not interested in the word "cure" -- gives the example of early 1900's cancer situation. People used to be ashamed to use the word.

Wrapping is up, time for lunch.