Friday, May 22, 2009

Prize4Life News Digest

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The Prize4Life team is constantly monitoring news about ALS, Non-profits/Philanthropy, Crowdsourcing/Inducement Prizes, and the Healthcare Industry. We've decided to start sharing the best of those findings via our blog. Here is our first edition:


ABOUT ALS:

First 'Neuroprotective' Gene In Patients With Amyotrophic Lateral Sclerosis Isolated
A group of scientists led by Bob Brown have discovered a genetic variant that can improve survival in ALS patients. Having this particular genetic variant appears to slow the rate of disease progression and may improve survival as much as Riluzole. It also provides another possible avenue of exploration in the hunts for treatments and a cure.

ALS Musician Composes CD with One Finger
Ace Noface, a 38 year old musician diagnosed with ALS, has composed a new CD called Toxic Charm. You can hear some of his music here: http://www.youtube.com/watch?v=68YI82ieWJE


NONPROFIT/PHILANTHROPY:

70th Anniversary of Lou Gehrig's Farewell Speech: The ALS Association Launches the 'Covering All the Bases Hitting Challenge'
ALSA has launched a new fundraiser as part of MLB’s 4ALS Awareness initiative (commemorating the 70th anniversary of Lou Gehrig’s famous “Luckiest Man” speech): people can make a pledge for every hit made by the baseball team of their choice. All the money raised will support ALSA chapters.

ALS Therapy Development Institute, the World's Largest Non-Profit Biotech, Appoints Steve Perrin, Ph.D., as Chief Executive Officer
Steve Perrin, ALS TDI’s Chief Scientific Officer, has also become the organization’s CEO. Maureen Lister, the organization’s CFO and COO, will also take on the duties of President. These appointments have been made in the wake of the death of Sean Scott, an ALS patient and the former president of ALS TDI.


INDUSTRY:

Strength in numbers
An article about Dr. Brian Tseng, a colleague of Melanie’s who was at the AAN Annual Meeting. Dr. Tseng is studying Duchenne muscular dystrophy with the help of new technology that allows for rapid testing of large numbers of tiny muscles at once. This could be important not just for DMD but for any muscle-related illness.

Bill Gates funds British scientists in unorthodox health research
The Gates Foundation is funding about 80 initiatives (in Britain and elsewhere) that are high-risk, very creative proposals to solve some of the world’s most significant health challenges. The foundation recognizes that as many as 90% of these projects might fail, but they felt that it was important to invest in some high-risk, potentially high-reward ideas and see what happens. The willingness of the foundation to explore funding methods beyond traditional grants is exciting and could revolutionize aspects of global health.

Trophos initiates pivotal efficacy study of olesoxime in Amyotrophic Lateral Sclerosis (Lou Gehrig's disease)
Trophos, a pharmaceutical company focused on underserved conditions in neurology and cardiology, is beginning a study of the efficacy of their drug olesoxime after phase I trials revealed the drug to be safe and well-tolerated. The trial is expected to take 18 months and Trophos is planning to recruit 500 ALS patients.

Biotech nonprofits immune to recession — for now
Nonprofit biotech companies (or biotech companies funded primarily by nonprofits) are doing surprisingly well despite the recession. Aeras Global TB Vaccine Foundation is among a few such organizations that is hiring new employees, expanding their facilities, and starting new clinical trials. Experts believe this may be because those who fund such organizations (as opposed to traditional biotechs) may take a longer view of what they are trying to accomplish and may be more willing to fund a company that is working on a cause in which they believe. It would be interesting to see if this holds true for ALS TDI (which is itself a nonprofit biotech company) and if it continues to be true as the situation continues to worsen for most other biotech companies.

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