Science & Advocacy: Working Together Toward a Cure


We invite you to watch and share: "The Parkinson's Community: Science & Advocacy Working Together Toward a Cure"


Earlier this year, the Parkinson's Action Network (PAN) hosted its inaugural Postdoctoral Investigator Poster Session in Washington, D.C., at which 17 researchers showcased their work in the field of Parkinson's research. After the poster session, these researchers joined grassroots advocates from their states in meetings with Members of Congress to fight for Parkinson's research funding. Bringing researchers and grassroots advocate leaders together strengthens PAN's unified voice -- particularly the message that federal funding for Parkinson's research is critical to finding a cure.

Because we know how important it is to continue to bring researchers into PAN's advocacy outreach, we created this video to speak to them about the value of advocacy and how it can help augment their work in the scientific community.

Digger,

Thanks for posting the link to this video. AJ and I led the two teams of patient advocates and researchers who visited with California Representatives and Senators on “Hill Day.” I can tell you that having scientists talk directly about the work they are doing to alleviate the immense difficulties described by patients and care partners, made a profound impact on the legislators and their staff. Having participated in these assaults on Capitol Hill for many years now, one could see the difference, as staffers and Representatives literally sat up straighter, listened more intently, and were visibly moved as the research scientists added hard facts and figures to the often heart-wrenching personal stories told by patients and partners.

Hill Day is a hard day for patients. PAN asks a lot of their advocates. They ask them to tell complete strangers in a public setting about some of the most difficult and personal aspects of their lives - their struggles and their hopes and their fears. It is not an easy thing to ask, yet time after time patients and those who love them rise to the occasion and reveal the damaged and disabled person who exists just beneath the chemical costume of medications and therapies that help them disguise the worst of their symptoms and function with at least some success in the everyday world around them.

Having research scientists, including clinicians who see patients on a regular basis, in the room to present the science that supports the story, the science that provides the promise of therapies to reduce or eliminate the suffering described by the patient only a moment earlier, added immensely to the argument that increased funding for research into Parkinson's disease and other chronic neurological illnesses should be a priority on the “to do” list of our legislators. The scientest's enthusiasm in describing their work, as well as their palpable empathy as the patients described their day-to-day lives, was moving even to a grizzled old patient like me.

As you know, the Presidents budget proposes that the NIH be flat-funded in the next fiscal year. Given general and health care inflation, that means a real-dollar decrease in funding for diseases like Parkinson's. The testimony of patients, supported by the science of the researchers, provided a one-two punch that was sorely needed and will increase the likelihood of increased funding for Parkinson's at the federal level.

Thanks again,

Greg Wasson

a great combination because they don't know for sure how accurate we are and some don't know anything about it at all --science that is.

thanks for posting digger