May 2012 Monthly Message

Parkinson’s Community Can Benefit from Additions to FDA User Fee Legislation
Within the next few weeks, the Parkinson’s Action Network (PAN) expects Congress to pass important Food and Drug Administration (FDA) legislation critical to the Parkinson’s community.  While the patient advocacy community encourages patient-focused legislation being attached to the PDUFA and MDUFA reauthorizations, the pharmaceutical industry prefers more “clean” reauthorization.  Full article here.

Advocate Profile:  Jackie Hunt Christensen
Jackie Hunt Christensen, PAN Minnesota State Director and a founder of Health Care Without Harm (HCWH), was recently honored with HCWH’s 2012 Environmental Health Hero Award for her volunteer work to advance environmental health science or policy.  We interviewed Jackie about her work, and we asked her to share why advocacy is important to her and how others can be encouraged to get involved with PAN.  Full article here.

Meet Parkinson's Researcher Advocates Working Toward a Cure (Video)
We invite you to watch and share PAN’s new video, "The Parkinson's Community:  Science & Advocacy Working Together Toward a Cure."  Bringing researchers and grassroots advocate leaders together reinforces the message that federal funding for Parkinson's research is critical to finding a cure.  We created this video to speak to researchers about the value of advocacy and how it can help augment their work in the scientific community.  To watch this moving video, click here.

Comcast Newsmakers:  Lou Nistler
Executive Director of the Parkinson Foundation of the National Capital Area talks about the Washington, D.C., area Parkinson’s community and the work the PFNCA does to serve them.  To watch the video, click here.

From Parkinson’s Caregiver to Parkinson’s Advocate:  Sarah King
PAN NY Assistant State Director Sarah King penned a blog post for the Dana Foundation about becoming a Parkinson’s advocate.  “What does it mean to be an advocate?  An advocate works to improve quality of life for themselves and their fellow citizens.  As a disease advocate, this means fighting for better care and resources for patients and families.  It means … helping to shape the future of healthcare by educating policymakers on the issues affecting patients and the long-term value of funding medical research.”  To read the full blog post, click here.

New $20 Million NIH Program Aims to Uncover New Uses for Existing Drugs
U.S. Secretary of Health and Human Services Secretary Kathleen Sebelius recently announced a new $20 million grant program at the National Institutes of Health (NIH) to investigate whether existing drug compounds can be used to treat diseases and illnesses other than those they were originally developed to treat.  Sebelius said the program is designed to "see if we can teach old drugs new tricks."  Read more here…

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.