Jan. 7, 2016
Dear Parkinson's Community:
We’ve begun a new year, and we have at least 2 billion reasons to be thankful and optimistic about 2016. Shortly before adjourning for the year in December 2015, Congress passed a broad funding package that included a $2 billion increase for the National Institutes of Health (NIH), the largest public funder of Parkinson’s disease research in the world. While the almost 7 percent increase for NIH, the most in 12 years, was itself remarkable, perhaps the greatest achievement was the overwhelming bipartisan support behind it. The spending deal had its share of controversies, but prioritizing medical research was not among them. And that is due in no small part to you.It’s because you've dedicated your time and energy to mobilizing your communities and educating policymakers about the realities of living with Parkinson’s. It's because you’ve been willing to share your stories as patients, caregivers, family members, researchers, and clinicians – making personal what could otherwise be dismissed as abstract. Yes, we’ve had our share of setbacks as well, including falling just two votes short of permanently repealing the Medicare therapy caps last spring. But, in my first full year as President and CEO of PAN, I witnessed, and was proud to be a part of, the passion and power of a truly unified advocacy community. Do not let anyone ever convince you that your voice does not matter. I see too much evidence to the contrary, even in a place that can be as dry and cynical as Washington, DC, every day. I want to say thank you, from all of us at PAN, for all that you do and for being constant sources of inspiration and energy.
Looking ahead, 2016 will be another challenging year, but also one filled with promise. Through the first quarter, our policy efforts will be dedicated to:
- Establishing a national registry at the Centers for Disease Control for Parkinson's and other neurological disorders. Language to create the registry was included in the House-passed 21st Century Cures Act (H.R. 6) and we are working to ensure that it remains a priority in the Senate's version of the Cures legislation, which is likely to be unveiled in the coming weeks.
- Promoting telemedicine and supporting other access to care initiatives that have immediate impact on the ability of people with Parkinson's to receive the best treatment possible and ensure a better quality of life.
- Continuing advocacy efforts to strengthen funding for medical research that will lead to better options for managing Parkinson’s, more effective treatments, and eventually a cure.
I will close by asking you to take a moment to do something that has become all too rare in the world of public policy – and that is to say thank you to your elected officials. Whether they always voted our way or seemed absent in times when we needed their voice, let them know that you're paying attention and share with them our policy priorities. The link below will direct you to an email message to send to your Members of Congress. Let's start 2016 on the right foot by taking the opportunity to find common ground and build better relationships with those who represent us in Washington, DC.
It’s our time to make great things happen, and I look forward to taking the journey with you.
Sincerely,
Ted Thompson
President and CEO
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