[paula_w]

Comments anyone?

http://www.huffingtonpost.com/katie-..._b_109369.html

paula

[chasmo]

Originally Posted by paula_w

Comments anyone?

http://www.huffingtonpost.com/katie-..._b_109369.html

paula

I am UNpleasantly surprised at the revelations contained in the article. I think this is an ideal area for someone like Warren Buffet or Bill Gates to get in. Their foundations could MAKE money and do a lot of good.


Charlie

[gaykir]

http://www.hhmi.org/about/


Here's a wonderful foundation with billions giving grants to researchers with few, if any restrictions.....here are the grants for PD research.....


Search Results for "parkinson's disease" in "All Investigators": [1-4] of 4 results


Nancy M. Bonini, Ph.D.
HHMI Investigator
Molecular Genetic Approaches to Neurodegenerative Disease
University of Pennsylvania
Philadelphia, PA







Stanley Fields, Ph.D.
HHMI Investigator
Genomic Analysis of Protein Function
University of Washington School of Medicine
Seattle, WA







Susan L. Lindquist, Ph.D.
HHMI Investigator
The Surprising World of Protein Folding
Massachusetts Institute of Technology
Cambridge, MA







Thomas C. Südhof, M.D.
HHMI Investigator
Synapse Formation and Function
University of Texas Southwestern Medical Center at Dallas
Dallas, TX

[aftermathman]

partnerships for bodies such as MJFF.

I am pleased with the renewed focus of MJFF which 2-3 years ago seemed to be wallowing in "academia", e.g. the obsession with a biomarker (not to understate the importance of that).

MJFF should be all about getting product to market in the shortest possible time and industry partnerships are an essential part of this. The effectiveness of partnership can be seen by the pace of Ceregene's partnered trials and Neurologix. Despite being first to trial, Neuroloix is yet to enter Phase II trials whilst Ceregene is well under way with its PII trial. Neurologix want funding assistance:

"Others wish they had that stamp of approval. "People ask us why we don't have funding from Michael J. Fox," says John Mordock, chief of Neurologix (otcbb: NRGX.OB - news - people ), a biotech company that has completed an early stage gene therapy trial for Parkinson's".

showing that the market is receptive to this approach.

Press on MJFF, some partnerships will fail but isn't that the way of biotech life ?

Neil.

[indigogo]

way to go Katie! I love that she is speaking out this way on a prominent platform.

My take is a little different, a little off topic, but a message I hope she receives along with anyone else in the PD Establishment who are making important decisions on our behalf. That said, I just posted this on Huff in response to her blog:

I'm glad Katie is at the MJFF helm; innovative thinking is our only way out, and a cure surely possible one day. I just wish more attention was being given to funding innovative models of care for current PD patients.

While MJFF searches for a cure, money should also be found for education and awareness of the new developments in patient care and health management. That’s difficult. Katie Hood’s job to find a cure for PD is hard, but raising the money is relatively easy. Cures sell. Care is another matter.

The front line warriors in the battle to keep patients going are the doctors and allied health professionals who see people suffering in their clinics everyday. Clinicians are developing new models of PD care; they know that an integrated program of drugs, exercise, and a variety of speech, occupational, physical and mental health therapies can improve the lives of most of those living with PD. I know mine has.

Unfortunately, this groundbreaking work is difficult to fund in the chase for medical research dollars. It’s just not sexy. But it is important, and it’s available now.

There are a million-plus people living with Parkinson’s in the U.S. who could have a better quality of life while waiting for (or joining a clinical trial), MJFF to find the answer; the future is bright. We need a greater commitment to improving the lives of those of us living with PD today, a commitment to the innovations in both cure and care.

[pegleg]

I enjoy reading most anything she writes, because what she says is simple, yet profound (so does that mean what she says is simply profound? lol).

Seriously, she has a skill for weeding out the fluff in the talking about the research industry - and it IS an industry - and telling it like it is. For example, this CEO of Fox Foundation says: "we must work as intellectual and financial partners with industry, from tiny biotechs to Big Pharma." I couldn't find any stats on this, but I would speculate that "tiny biotechs" have initiated more successful discoveries (i.e., those that make it from lab to shelf ) than have "Big Pharma" companies. Big Pharma just uses their buying power – which sounds a little cold, don’t you think?

My take is what Katie suggests as one viable solution to the black hole in academic research, is for there to be a harmonious marriage between those actually doing the research and industry, or those sponsoring the research. She reports on the Fox Foundation status: "With 21 active industry partnerships at the time of this writing, we're funding the pursuit of multiple disease-modifying PD treatments that likely otherwise would have been shelved for lack of capital.
And how does one go about that (the researchers/industry marriage)? Well, she was certainly at the right place at the right time – Biotechnology Industry Organization (BIO). Paula and I attended last year (along with Perry Cohen) . That’s the place to network with industry and researchers – over 20,000 this year from 48 states and over 70 countries!.

And although I know that the Fox Foundation does so more than we realize, I wish we had heard a little more about the role of the patient. We are walking billboards! Maybe I’ll pay a visit to Huffingtoon and post something about a reciprocal relationship between researchers – industry – AND the patient.

Remember: ." Money talks, but it’s the results that find cures and better treatments.

Peggy