June 2012 Monthly Message

PAN Creates Exciting New Researcher Advocacy Prizes
PAN has established two groundbreaking new prizes to honor outstanding advocacy in the scientific community:  Parkinson’s Action Network Researcher Advocacy Prize is a $50,000 prize supported by UCB, to be given to an established Parkinson’s disease researcher in the U.S. who has excelled in biomedical research advocacy and community outreach.  The Parkinson’s Action Network Postdoctoral Advocacy Prize, a $25,000 prize supported by Teva CNS, will be given to a postdoctoral Parkinson’s disease researcher in the U.S. who has excelled in biomedical research advocacy and community outreach.  Click here to learn more!

Advocate Profile:  Lisa Bain
Balancing work, family, caregiving, and advocacy can be a challenge, but PAN’s Idaho State Director Lisa Bain makes it work.  Read this interview to learn about her proudest moments as an advocate, and how she finds time to be part of PAN’s unified voice in fighting for better treatments and a cure for Parkinson’s.  More...

National Parkinson’s Organizations Weigh in on FDA Clinical Trial Regulations
PAN led an effort with the national Parkinson’s organizations to offer recommendations to the Food and Drug Administration (FDA) on how to modernize regulation of clinical trials and bring new treatments and therapies to market faster.  To read more about these recommendations from PAN, American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, The Parkinson Alliance, and Parkinson’s Disease Foundation, click here.

U.S. Senate and House Approve FDA User Fee Legislation
Every five years, Congress must reauthorize legislation – the Medical Device User Fee Act (MDUFA) and the Prescription Drug User Fee Act (PDUFA) – which enables the Food and Drug Administration (FDA) to collect fees from the pharmaceutical and medical device industries to partially fund the agency's efforts to approve new drugs and therapies.  During this process, both houses of Congress approved related legislation intended to streamline and hasten the FDA's therapy approval process and ensure people with diseases like Parkinson's have quicker access to safe and effective therapies.  The two versions of the bill will move to conference where members of both the House and Senate will iron out any differences before sending a unified version to the president for final passage into law.  There is strong congressional desire to finalize this legislation by the end of June, and the legislation needs to be signed by the president by the end of September to keep the FDA functioning at its current levels.  For more information, you can check out the FDA section on PAN’s website.

Zachary T. Levine, M.D. Joins PAN Board of Directors
Zachary T. Levine, M.D., Principal at the Washington Brain & Spine Institute and Chair of Neurosurgery and Director of Functional Neurosurgery at Holy Cross Hospital, has joined the board of directors of the Parkinson’s Action Network (PAN).  “As a well-respected surgeon who treats people with Parkinson’s disease, Zach Levine has been a long-time supporter of PAN’s work in the Parkinson’s community,” said Amy Comstock Rick, CEO of PAN.  “We welcome his clinical perspective and expertise in our efforts to educate and promote strong federal funding and policy support for the 500,000 to 1.5 million Americans with Parkinson’s,” she added.  To read the announcement of Levine’s new Board position, click here.

National Health Council’s Marc Boutin Talks FDA on Biocentury TV
Marc Boutin from the National Health Council appeared with the FDA’s Rick Klein on BioCentury TV to talk about risk-benefit decisions when it comes to drug and device development and clinical trials.  They also discussed the need for greater patient engagement in the development and approval of new treatments and cures.  Click here to watch the show.

Greg Wasson, PAN Board Member and California State Director, Speaks About Advocacy

Greg Wasson recently addressed the Board of Governors of the California Institute for Regenerative Medicine (CIRM) and discussed the patient perspective on Parkinson's disease.  In this short video, Greg talks about PAN’s mission, and the advocacy work he and other advocates do to fight for strong federal funding and policy support for the 500,000 to 1.5 million Americans living with Parkinson’s disease.   To watch this great video, click here.

Comcast Newsmakers:  Dave Moore
Dave Moore, senior director of government relations for the Association of American Medical Colleges, appeared on Comcast Newsmakers to talk about the impact federal biomedical research funding has on local economies across the country.  Click here to watch the interview.

Celebrate the Parkinson’s Community at the 2012 Udall Awards Dinner
Join the Parkinson’s Action Network on October 3, 2012 for the Morris K. Udall Awards Dinner!  The Honorable Patrick J. Kennedy is special program guest.  Dinner Co-Chairs are Diane and John Rehm and Morton Kondracke.  Honorary Dinner Chair is Michael J. Fox.  PAN Florida State Directors Michael Church and Gretchen Garie-Church are the 2012 Milly Kondracke Award for Outstanding Advocacy honorees, and Colonel Karl Friedl is the Morris K. Udall Award for Outstanding Public Service honoree.  It’s an exciting night in Washington, and proceeds from the dinner support the work of the Parkinson’s Action Network.  Click here to learn more, become a sponsor, place a tribute message in the program book, or buy tickets to the dinner!

Save the Date:  2013 PAN Public Policy Forum
The Parkinson’s Action Network will hold its open-to-the-public 2013 Public Policy Forum in Washington, D.C., February 25 – 27, 2013.  Watch your email for details in the coming months!

Parkinson’s in the Media
A round-up of some recent news articles of interest to the Parkinson’s community.  Click here.