A Weekly Advocacy Message from Mary Woolley: Deep thoughts occasioned by ice buckets

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Dear Research Advocate: 
 
You have by now heard about the ALS ’€œice bucket’€ challenge (show support for ALS research by dumping a bucket of ice water over your head and/or writing a check for $100 to the ALS Association, then challenge three others to do the same.)  Whether viewed as a welcome late-summer distraction from imponderables like conflict in the Middle East, on-going clashes in Ferguson, Mo., or the mounting death toll from Ebola, or, rather, as the emergence of a new kind of advocacy similar to what produced the walks, runs and bike-rides for research that are ubiquitous today, the ’€œice bucket challenge’€ is worthy of attention.

I think that public attention to the ’€œice bucket’€ challenge is not only good for ALS research (and all the patients and their families who cope with this devastating illness), but is an opportunity to engage a newly-interested sector of the public, including all those members of Congress who have accepted the challenge. Think about those freely written $100 checks and consider that the NIH budget buys only about $100 worth of medical research per American, per year, on all diseases as well as vital basic research.  Add to that other federal agencies’€™ budgets, the private sectors’€™ expenditures (industry, academia, philanthropy, patient groups) and we can maybe triple that amount (generously computed, and including development along with research). Is that enough to assure better health and prosperity for our nation? I’€™d say not even close.  Not when brilliant young people are discouraged to the point of leaving the country if they want to work in science;  not when other nations are poised to take over U.S. leadership in R&D; not when we are looking at ALS heartbreak and huge federal debt associated with the costs of Alzheimer’€™s, as just two crises we should be focused on intently, with all the resources we can bring to bear. 

Where will change come from?  Probably not from more ice bucket challenges, per se, yet we should not underestimate the power of social media that is driving this challenge.  The science community is not particularly adept with social media and may even disparage it.  But we do so at great risk if we care about staying relevant and accessible to the public.  Using social media this election season to ask candidates to take a stand on the importance or lack of importance they assign to medical progress is a different challenge than pouring freezing cold water over your head and/or writing a check to the ALS Association.  Both are ways to speak out about the importance of fighting back against diseases instead of standing down, as Congress appears to be doing. Contact your candidates and tell them what you think. Don’€™t wait; seize this teachable moment; make a phone call; show up at a town hall meeting;  use social media to connect to candidates. Tap our list of candidates’€™ Twitter handles to easily direct a tweet to their attention.  And take the ice bucket challenge!

Register now to participate in our National Forum in Washington on Sept. 11.  Every year we ask leaders from across the research ecosystem – in social media terms, the .orgs, .govs, .edus, .coms – to engage us and you in ’€œstraight talk’€ about what’€™s ailing medical progress and what we can do about it!
 
Sincerely,

Mary Woolley
 

Post ID: 
2309

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Funding research gives all of us a better chance of living a healthier life.
Pam Hirata, heart disease survivor