Dear Parkinson’s Community,
In addition to this being Parkinson’s Awareness Month, April 6 – 12 is National Volunteer Week. The PAN staff and I want to take this opportunity to thank everyone who is active with PAN, but especially our 154 grassroots leaders around the country. These volunteers, many of whom work multiple hours each week raising awareness of PAN and Parkinson’s policy issues, aided PAN in achieving the successes that we had in 2013.
2013 was a banner year for PAN volunteer leaders educating policy makers and the public on issues that impact our community. Our leaders spoke at support groups, published letters to the editor, hosted seminars and fundraisers, and met with their Members of Congress. Although last year was extremely tough for achieving policy change, it was through the efforts of these leaders around the country that we were able to:
- increase access to therapy services for people with Parkinson’s;
- minimize cuts to research funding for Parkinson’s disease at the National Institutes of Health (NIH);
- promote new legislation that would allow people with Parkinson’s to access specialists through telemedicine; and
- maintain full funding for Parkinson’s disease research at the Department of Defense (DoD).
And 2014 looks to be just as active. This year, PAN’s State Directors, Assistant State Directors, and District Delegates will be working with the PAN staff to not only maintain the programs that we worked so hard for in 2013, but also to explore new and exciting ways that we can promote access to quality care and ensure necessary research to find better treatments and a cure for Parkinson’s. This year, our goals include:
- ensuring that the NIH focuses its precious research dollars towards areas targeted as priorities by the Parkinson’s’ community;
- maintaining the Parkinson’s research program at the DoD;
- promoting legislative ideas that will incentivize greater private investment in areas of serious unmet medical need like Parkinson’s;
- guaranteeing that everyone who qualifies for medically necessary therapy services under Medicare has access to that care; and
- ensuring that currently outdated Social Security Disability standards are updated to reflect the full myriad of Parkinson’s symptoms so that everyone who is no longer able to work qualifies for disability insurance.
I hope that you will take a moment today to reach out to PAN State Directors, Assistant State Directors, and District Delegates and thank them for all the work that they do on behalf of the entire community. If you do not know who they are in your state, you can find that information by clicking here. Or, as a way to both thank them and help PAN support its vital 2014 efforts, you can post a message to your state volunteer or another loved one on PAN’s Tulip Tribute Garden. PAN’s Tulip Tribute Garden is a wonderful way to share with the community your appreciation for someone special in your life. Your message and gift will be put to immediate use to move PAN’s mission forward.
As always, thanks to everyone for all of your continued support for PAN. 2014 will be a busy year, but we are optimistic that, together, we can achieve our goals.
Amy Comstock Rick