Tag Archives: ALS

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

Dear Research Advocate: 
 
You have by now heard about the ALS “ice 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 “ice bucket challenge” is worthy of attention.

I think that public attention to the “ice 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.  Continue reading →

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Fighting for American Priorities

Tell the House to Reject the House Majority’s Budget Plan

In response to President Obama’s budget proposal, House Budget Committee Chairman Paul Ryan (R-WI-01) released a budget plan titled, “The Path to Prosperity.” In this 10-year budget, Rep. Ryan proposes drastic cuts to the funding used to support medical progress among other national priorities. If this budget became law, it is a near certainty that our nation would lose its global lead in science and innovation, undermining jobs, sabotaging any progress toward economic stability, and stalling research that is addressing deadly and disabling health threats.  Research reduced cancer deaths among children by 2.1% per year from 1975 to 2010 — an overall decline of more than 50%. Is that going to be the end of the story when cancer and other childhood illnesses still take the lives of hundreds of thousands of children each year? When the incidence of Alzheimer’s is exploding, when chronic conditions are proliferating, when Parkinson’s and ALS and MS and thousands of other illnesses are causing untold suffering?  The Ryan budget laser focuses on one type of government spending, not even the largest or fastest-growing segment of the budget, and cuts it so deeply that it would place desperately needed medical progress on hold and our nation’s very future at risk. Send a message to your representative in the House and say NO to the Ryan budget.

Take action now!

A Weekly Advocacy Message from Mary Woolley: Dying to know more…

Dear Research Advocate,

The first presidential debate gave us little to go on regarding research for health. Americans are dying to know more – many, quite literally dying – about what either presidential candidate would do to speed up medical progress in the face of Alzheimer’s disease, Parkinson’s disease, ALS and the host of other disabling and deadly health threats that breed suffering, compromise independence and drive spiraling health care costs. Add to that the pivotal role medical innovation plays in our economy, and Americans absolutely deserve to know whether candidates will champion or shortchange it. All of us must say to candidates: Tell us what you will do, share your views – candidates for president and Congress alike. Take 30 seconds to ask your candidates to speak out and then help more by sharing this alert.

Another issue that the candidates failed to adequately address in last night’s debate was sequestration, and that’s why we must continue to speak up. If more of us get involved we can shift the halt-the-sequester momentum into high gear – check out the following articles and then write your own op-ed: Athens (GA) Banner-HeraldMontgomery Advertiser. The Los Angeles Times highlighted a new AAAS report on the impact of sequestration (read here). The report provides estimates of just how much states stand to lose under sequestration, with California alone being deprived of over $11 billion in R&D funding over a 5-year period! How much does your state stand to lose? Find out via FASEB’s outstanding series of new fact sheets that illustrate the importance and impact of NIH funding close to home. Take a moment to find the fact sheet for your state or district and use this information in your advocacy efforts.

For years, our public polling has shown that Americans strongly support incentives for companies that are investing in R&D – investments that create jobs and foster innovation. An article recently published in The Atlantic drives this point home, calling on policy makers to not only expand the R&D tax credit but to make it permanent. This is a common-sense policy solution that would enhance our competitiveness at a time when other nations are boosting investment in research and creating new incentives to encourage the private sector to invest. We need to step up, or we will be left behind.

And, speaking of the global nature of science as well as economic interdependence, we are eager to hear the announcements of the Nobel Prizes, starting this coming Monday. Here’s a suggestion: Take the opportunity of the announcements to make a phone call, send an email or write a letter to the editor to call attention to the importance of maintaining strong support of science in this country. Doing so could prove critical in reversing the perception among Capitol Hill staffers that few members of the science community are engaged in the public policy conversation – volume matters and that means every one of us needs to step up.

Sincerely,

Mary Woolley