Parkinson’s Action Network

by Amy Comstock Rick, CEO of Parkinson’€™s Action Network 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...
The genesis of the Parkinson’€™s Action Network goes back to 1987, four years before the organization’€™s founding. That year, Joan Samuelson left a career in law after being diagnosed with Parkinson’€™s disease; she threw her might into advocating for people living with Parkinson’€™s. Four years later, PAN was born, and its successful advocacy continues today. The Parkinson’€™s Action Network (PAN) is a unique organization in the patient advocacy world. PAN represents the entire Parkinson’€™s community on funding and quality of life policy priorities for those living with the disease. PAN works with other national Parkinson’€™s organizations and is the only organization addressing...
Parkinson’€™s disease affects millions of people worldwide. Patient advocacy groups like the Parkinson’€™s Disease Fou ndation and the Parkinson’€™s Action Network provide resources to patients and advocacy tools to promote more research on this devastating disease. PDF has a toolkit to empower advocates and patients to spread the word, educate themselves and others and learn more about Parkinson’€™s research funded by PDF. Meanwhile, PAN is urging advocates to contact their representatives in Congress to support a bipartisan effort to increase funding for the National Institutes of Health; you can also plant a virtual tulip in honor of a loved one and make a contribution to PAN in their...
Research!America President and CEO Mary Woolley joins James ’€œJ.P.’€ Paluskiewicz, deputy chief of staff to Rep. Michael Burgess, MD (R-TX); Cynthia Rice, vice president for government relations, Juvenile Diabetes Research Foundation; Israel Robledo, Parkinson’€™s Action Network Texas state director; and Lisa Shulman, MD, professor of neurology, University of Maryland in a panel discussion about the power of research advocacy. The panel, hosted by Parkinson’€™s Action Network and moderated by PAN CEO and Research!America Board member Amy Comstock Rick, JD, discusses how to be an effective advocate and communicate effectively with congressional staff to achieve your advocacy goal. When...
Dear Research Advocate, Sequestration is barreling down on us. With the clock ticking to March 1, there are disturbing indications that Members of Congress on both sides of the aisle are prepared to let sequestration move forward. It sounds much too painless to make cuts to a category called ’€œdiscretionary’€ ’€” the very word invites belt-tightening ’€” not to mention that this blanket term masks the importance of the programs that would again be damaged (the Budget Control Act took the first swipe at them, and the fiscal cliff agreement, the second). We need to unleash the power of advocacy to put human faces on the rhetoric. We know the reasons research can’€™t be cut without severe...
Dear Research Advocate, With a stellar team of advocates from across the research community, we have been blitzing Capitol Hill this week with our message that we need cures, not cuts. Research!America and our partners have participated in more than 60 meetings with Members of Congress, including key leadership and their staff. My thanks to the 140+ groups that signed on to our community letter to congressional leadership. Many partners have activated their grassroots to join the call Congress day, and there is still time to join the In-District Drop-In day (today) and a social media push on Friday. We also encourage you to keep up the drumbeat with emails and phone calls to Hill offices...

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If concerted, long-term investments in research are not made, America will lose an entire generation of young scientists.
Brenda Canine, PhD; McLaughlin Research Institute, Montana