21 August 2014

Jon Shepherd of Camden Depot Takes the ALS Ice Bucket Challenge


Nick Faleris of Baseball Prospectus issued his ALS Challenge to me today. He was kind enough to include his support to NIH in his chilly presentation. As you know, I am an anti-ribbon kind of guy, so taking part in this goes against my character. That said, I think it is a great platform to make people aware of our science funding crisis.

Due to budget issues, we have reduced funding at the National Institute of Health by 1.05 billion. If you are specifically concerned about ALS, the cut has been around 20 MM per year. The Ice Bucket challenge has resulted in a bump of 14 MM for this year alone. Who knows what kind of episodic push there is next year for ALS or the many other diseases we need cures and therapies.  NIH has asked for 30.5 B in funding this year, which is a reflection more of the budget climate than the organization's true needs.  We should be demanding something north of 32 B.

I will be answering Nick's call for donations, but I want to change the concept moving forward. I want you to write to both of your senators and your representative in the House. This tool might help you find yours: http://whoismyrepresentative.com/

Anyway, drench yourself with ice water if you wish, but the best way to fight these diseases is a long-term commitment.

I challenged two good friends of mine, researcher Eli Moore and Chesapeake Fisherman Pete Ide.  To keep this in the baseball family, I also challenge Bill Baer of Crashburn Alley.

I offer this as a sample letter for you to edit as you see fit. I edited mine to reflect my own personal experiences with family suffering from ALS, multiple sclerosis, and cancer:

As a constituent, I urge your strong and unwavering support for scientific research in medicine, biology and related areas that is best served through federal funds directed to the National Institutes of Health (NIH). I ask that you support funding of at least $32 billion for NIH's research into diseases that affect millions of Americans, including ALS. It is critical that the United States make forward-thinking investments that promote medical breakthroughs as well as maintain our international leadership in biomedical research.

NIH serves first and foremost as a vehicle to save and improve the lives of millions of Americans, including tremendous breakthroughs in areas such as heart disease, stroke, and childhood leukemia. Yet, satisfactory solutions are still being sought for some of our most challenging diseases, including ALS, cancer, and Alzheimer's disease. For millions of individuals and families living with ALS and other chronic, progressive diseases, NIH research offers great promise for better treatments and, ultimately, a cure.

The private sector is important in developing treatments but they depend on discoveries emerging from long-term, basic research supported by the federal government. Basic research generates the ideas required to develop new processes, new products, new industries and new jobs. Without consistent and stable funding for the NIH, talented scientists have no choice but to stop doing research, research that potentially could have been the breakthroughs for tomorrow's treatments and cures.

Now is the time to strengthen the nation's biomedical research. America needs more investment in medical research, not less. I urge you to support the best possible funding outcome for biomedical research and for the nation.

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Thank you guys. Please make me proud.

If you wish to post your challenges and writing in the comments, please do.

5 comments:

Lou Proctor said...

Well said and done, Jon.

Jon Shepherd said...

Thanks, Lou.

Nate Delong said...

Excellent Jon! Like you said, the idea to stress funding to NIH as a principle means of finding advanced treatment and cures for a number of diseases is much more important than a one time funding push.

I was recently "challenged" earlier this week and I replied to that challenge on Facebook yesterday with the following:

I'd like to thank David Watts and Jamien Payne for nominating me for the ALS ice bucket challenge. I am declining this challenge and will be donating to ALS and the American Heart Association, as well as writing my congressman to increase funding to NIH. I am encouraging Nes Bauer, Nick Matala, Dalton Shaughnessy, Sean Maeder, Jeff Zelinske (I see that Austin Hess has already been challenged, so I will spare him another) and anyone else reading this to donate any amount you're comfortable with to a charity of your choice and to also send a letter to your congressional representative(s) to restore sufficient funding to the National Institute of Health, whose research helps a great deal to help find cures to not only ALS and heart disease but many other diseases that affect millions of Americans every day.

Donate to ALS --> http://www.alsa.org/donate/
Donate to American Heart Association --> http://www.heart.org/HEARTORG/
Write to Congress to Fund NIH --> http://capwiz.com/jscpp/issues/alert/?alertid=63296631&PROCESS=Take+Action

Anonymous said...

Science and government are strange bed fellows. But the spirit of your post is understood. Until the American people discover the root causes of the cancers that afflict our economic body, nothing will truly be changed. What's another few billion toward a 16 trillion dollar debt that gives the impression of hope for a cure to a destructive disease? Of course, a debt never repaid really isn't a debt but mere shackles to the private power that controls our nation. And this power already knows of scientific discoveries that would eliminate the need for Big Pharma, and bring relief to people in need. But why not take our ice baths and pay lip service to answers that will never come. After all, we just want temporary relief and not real answers.

Pat Holden said...

This is great, Jon.