Friday, October 29, 2010

Another Amazing 5K4Life!

If you weren't in Kendall Square last Sunday, you missed out on a great race! If you were, thanks for participating and/or sorry for making you sit in your car while the horde of runners zoomed by!

The second annual 5K4Life was a great success. We had 429 runners register, and we raised over $30,000 to support ALS research!

You can see a full listing of the results from the race here.

And feel free to peruse some photos from the 5K in our gallery!

All of us at Prize4Life want to thank the hundreds of people who made this event possible. In addition to all of those who ran and raised money, we had 37 extremely dedicated volunteers who helped us with everything from bag stuffing and water distribution to manning the registration tables and serving up pasta and sandwiches.

We also want to give a big shout-out to two teams in particular that really made the 5K4Life shine, Team Hammy and Team Ashley.



You've gotta love the level of enthusiasm Team Hammy brought! They were our top team fundraiser, contributing $5,510 to support our mission of accelerating the discovery of treatments and a cure to ALS.



Team Ashley
sent us scrambling for more registration cards, mobilizing 83 runners to participate in the race! The eponymous Ashley Agri had registered for the 5K4Life weeks in advance, but she was involved in a car accident that left her in critical condition and unable to compete. To show their support, Ashley's friends and family took up her mantle and ran for her. While Team Ashley was in high spirits for the race, the incident is a stark reminder of how fragile life can be and how so many of us take the ability to run or even walk for granted.

To all of those who ran or helped others run in support of the thousands of people currently afflicted with ALS who could not, we give our deepest and most heart felt thanks. And our best wishes and hopes for a speedy recovery to Ashley!

And if you are feeling bummed that you missed out, there's always next year!

Monday, October 18, 2010

ALS-TDI Hosts 2010 Leadership Summit

On October 3rd and 4th, the ALS Therapy Development Institute, our colleagues in Kendall Square, opened their doors for their sixth annual conference and open house, and Prize4Life was in attendance.

One of the great things about ALS-TDI’s Summit is the lengths they go to ensure the event is open and comprehensible to patient and families, not just researchers and scientists. As open and comprehensible as an incredibly complex and evolving scientific field can be, of course…

The research symposium portion of the Summit featured speakers such as Dr. Steve Perrin, CEO and Chief Scientific Officer of ALS-TDI, Dr. Fernando Vieira, Director of In Vivo Validation at ALS-TDI, Dr. Merit Cudkowicz, ALS Clinic Director at Mass General Hospital and Co-Founder of the Northeastern ALS Consortium, and several others. Topics ranged from drugs currently in the development pipeline and new mouse models, to the ongoing controversy over stem cells and which clinical trials show the most promise for participants.

This article in the MDA/ALS Newsmagazine covers many of the presentations and discussions in great detail. And ALS-TDI has also posted video of the conference on its website, though you do have to register with an email address to view it.

Two portions of the day were of particular interest to us at Prize4Life: Dr. Cudkowicz’s and Dr. O’Neill’s (of Biogen Idec) discussions on the need for a biomarker to advance research.

Dr. Cudkowicz acknowledged some of the frustration she has witnessed in the ALS community at the fact that the disease was discovered in the late 1800’s and yet there remains no effective treatment. But she pointed to the relatively rapid progress following the discovery of a gene associated with ALS in 1993, which brought new scientists, new minds, and new ideas into the ALS field. More recently, she discussed how the 2006 correlation of TDP-43 with sporadic ALS caused scientists studying TDP-43 in other fields, such as dementia, to begin to think about ALS and how a therapy might potentially be developed.

In order to spark a leap forward in research progress, Dr. Cudkowicz says a biomarker is needed. The vast majority of ALS treatments fail in Phase II trials. This makes the development of drugs both incredibly time-consuming and incredibly costly. A biomarker dramatically shortens the time required for drug development, thus driving down the overall cost of that development. If such a biomarker were discovered, “an explosion of [ALS] therapies would result,” according to Cudkowicz. When asked by patients what they can contribute, it is towards the discovery of a biomarker that Cudkowicz points them—encouraging them to donate blood and tissue samples which are critical tools for researchers on the biomarker quest.

Dr. Gilmore O’Neill, Vice President of Experimental Neurology at Biogen Idec, also emphasized the importance of a biomarker. He explained that any trial has three possible outcomes. A positive result is, of course, the most desirable—when a drug slows or arrests the progress of a disease. But the least desirable result is not a negative study, but rather a failed one—a study where not only does the drug not have the desired effect, but researchers cannot even be certain if the drug hit its intended target.

In essence, failed trials tell us nothing, and they do not advance research in the way that negative results can. An effective biomarker means, in Dr. O’Neill’s words, that researchers “…can throw out the garbage very quickly.” Without a biomarker, trials are forced to include more patients, must last longer, and are more likely to yield uninterpretable (failed) results.

Dr. O’Neill discussed biomarkers in the context of drug development for several other diseases—his underlying theme being the need for an ALS biomarker. At Prize4Life, we wholeheartedly agree. We believe the discovery of a biomarker for ALS is so important that we’ve put up a $1 million prize to spur on research.

And there has never been an organization more anxious for a reason to give away its money.

Tuesday, October 12, 2010

Join us on October 24th for the 5K4Life

In 16 years with the New York Yankees, Lou Gehrig played in 2,164 games. From 1925 to 1939, he played in 2,130 consecutive games. He played sick, and he played hurt. He played through slumps and stardom. Whenever Gehrig’s number was called, he stepped up to the plate. You aren’t born with a nickname like ‘The Iron Horse;’ you have to earn it. For 14 years, there was no force on heaven or earth that could keep Henry Louis Gehrig from playing baseball.

And then, on May 2nd, 1939, after months of steadily declining performance, Lou benched himself and ended his streak. In June of that year, he received the diagnosis: amyotrophic lateral sclerosis. ALS. Lou Gehrig’s disease. He would never play again.

More than 70 years later, there is still no cure for ALS. And that’s why Prize4Life was founded. Our CEO was diagnosed with the disease in 2004 at the age of 27. He knew that existing resources and research were not enough—something was needed to bring new minds and new money into the fight. Our model fills that need. Prize4Life offers large, cash prizes for targeted scientific breakthroughs that will help accelerate the search for a cure.

On Sunday, October 24th, we will host our second annual 5K4Life, a road race aimed at raising awareness and funds to help us achieve our mission and bring us closer to eradicating ALS once and for all.

The race will take place at 11AM in Cambridge Center. There will be food, refreshments, music, gifts, and prizes for the top finishers and fundraisers. For more information, or to register for the race, visit www.5k4life.org.

Today, 30,000 Americans have ALS. Most will die within 3 years. The disease will strip from them all voluntary muscle movement. They will not be able to feed themselves, let alone run.

But you can. Stand in solidarity with the patients and families struggling with this disease, and join us on October 24th.

Upon his death, Gehrig’s wife Eleanor said, “It was strange because there was no particular reason to keep playing without a break, no particular compulsion–except the fascination to add one more day, one more week, whatever you lost.”

As long as there is no cure for ALS, the reason seems clear: one more day, one more week may be all some people have. But we can change that.

For more information on Prize4Life, visit us at www.prize4life.org.