Tag Archives: Parkinson

April is Parkinson’s Awareness Month

by Amy Comstock Rick, CEO of Parkinson’s Action Network

Amy Comstock Rick Headshot (2)April is now about halfway over but there is still plenty of time to help raise awareness for Parkinson’s disease and the millions affected.

Parkinson’s disease is a chronic, progressive neurological disorder and the second most prevalent degenerative neurological disease after Alzheimer’s. So far this year, people all over the country have honored loved ones with Parkinson’s disease by helping the Parkinson’s Action Network (PAN) and the other national Parkinson’s disease organizations spread awareness of the disease and its impact on our nation.

PAN, a nonprofit advocacy organization based in Washington, DC, would like thank the hundreds of grassroots advocates who have already asked their local and state governments to proclaim April as Parkinson’s Awareness Month. A sampling of all local proclamations can be found on the PAN website, and you can view images of our grassroots leaders receiving their proclamations from council members, mayors and governors around the country. PAN is also thrilled that our representatives in the U.S. Senate proclaimed April Parkinson’s Awareness Month.

So why is an awareness month important? 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

A Weekly Advocacy Message from Mary Woolley: Reading between the Lines and then Taking Action

Dear Research Advocate,

As you know, the Republican Party Platform was unveiled Tuesday during the convention in Tampa. There are direct references to medical and health research and other statements that — if not explicit — definitely imply the need for such research. We can draw from both to enhance our advocacy efforts.

The following exemplifies the direct and indirect nature of the platform’s embrace of medical and health research:

“We support federal investment in health care delivery systems and solutions creating innovative means to provide greater, more cost-effective access to high quality health care. We also support federal investment in basic and applied biomedical research, especially the neuroscience research that may hold great potential for dealing with diseases and disorders such as autism, Alzheimer’s and Parkinson’s. If we are to make significant headway against breast and prostate cancer, diabetes and other killers, research must consider the special needs of formerly neglected groups.”

The platform explicitly supports federal funding for basic and applied medical research, and, if I am interpreting the text correctly, acknowledges the need to address health disparities as part of the nation’s research agenda. This statement also implies the need for health services research (HSR) to devise “solutions” that improve health care access, cost-effectiveness and quality. Unfortunately the House Labor-H appropriations bill precludes NIH funding for health economics research — a key subset of HSR — and virtually zeroes out the budget of the Agency for Healthcare Research and Quality, the main funder of HSR. The platform provides advocates fresh talking points as final appropriations decisions are made later this year.

The Republican platform also states: “Even expensive prevention is preferable to more costly treatment later on.” While the rest of the statement focuses on personal responsibility, research plays an undeniable role in effective prevention. Vaccines, the nicotine patch, successful drug and alcohol addiction treatment programs … all are grounded in research. Advocates can segue directly from the platform to the importance of prevention research at CDC and other agencies … and we should. Three other sections of the platform are noteworthy. It goes hard on the FDA, asserting that it needs significant reform. The platform does not mention funding, but there is a logical connection here. Patient groups, scientists, industry and FDA leaders themselves are all committed to strengthening the agency and are working hard to accomplish just that. Support for FDA reform cannot logically be decoupled from support for FDA funding, a point that must not get lost in the reform debate.

Second, the platform advocates making the R&D tax credit permanent. Bravo!  We should increase and make other improvements to the credit as well.

Finally, the platform opposes embryonic stem cell research. Not a surprise, but a disappointment.  Proponents must keep fighting this battle, drawing strength from the recent court victory in which President Obama’s executive order was once again upheld.

There is much to applaud in the Republican platform when it comes to federal support for both medical and health research. Let’s take that and run with it. In an article that appeared this week in Forbes, John Zogby discusses the results of our recent national poll. He focuses on the exceptional level of agreement between different demographic and ideological subsets of the American population on issues related to health and medical research. We see that reality reflected in many of the planks in the Republican platform. Indeed most of the results from our poll will not surprise you (except, perhaps, the fact that a majority of Americans of all stripes would pay a dollar more per week in taxes if they knew it was going toward medical research), but it’s a fact that most policy makers have not embraced medical progress as a goal worthy of mentioning in campaign speeches or on their campaign websites. Platforms aside, this gives Americans no basis by which to evaluate whether individual candidates will champion or chop research funding and no assurance that they will take medical innovation into account when evaluating policy decisions that could stimulate or stifle it. Your Candidates-Your Health is an important way that candidates can make their opinions known about medical and health research. Advocates can do their part by attending town halls, visiting campaign offices, writing op-eds and letters to the editor, and using these polling results to convince candidates that promoting medical progress should be one of their core missions.

We have our work cut out for us, but we will succeed if we do more than parse the rhetoric — we have to take action!

Sincerely,

Mary Woolley