Taking it to Capitol Hill: PD Advocacy Reflections from a Carepartner by Marc Jaffe

On Feb. 28, 2017, InMotion founder Karen Jaffe and I (her husband Marc) spent the day on Capitol Hill along with 200 other advocates, meeting with Representatives and Senators to express the concerns of the Parkinson’s community.

This was the first year that the Michael J. Fox Foundation had organized this day, having recently combined with The Parkinson’s Action Network. They prepared us well, with an all-day seminar so we knew what issues to bring up and how best to get the Congress men and women and their staffers to care.

Although the Ohio delegation was small with only three of us, we had successful morning meetings with  Representatives Steve Stivers, Pat Tiberi and Marcia Fudge,in whose district InMotion is situated as well as afternoon meetings with Senators Sherrod Brown and Rob Portman.

Our top priority issues were related to research and the importance of:

1.Funding the NIH to the tune of a $2 billion increase

2.Funding the Food and Drug Administration at $2.8 billion

3.Continuing the Department of Defense Congressionally Directed Medical Research Program for Parkinson’s disease at $20 million.

4.Funding the Centers for Disease Control and Prevention at $5 million to implement the National Neurological Conditions Surveillance System.

We also asked that they support the RAISE Family Caregivers Act  which will help support all the unpaid carepartners out there that keep so many with Parkinson’s and other diseases in better health.

And, of course, making sure that our community is not left behind as new healthcare legislation is considered.

It seemed to be a successful day on the Hill. All of our Ohio Representatives seemed to understand our needs and the importance of our requests. We will be following up and watching closely as the gears of government grind in motion.

Posted in Dr. Karen Jaffe, For Care Partners, For Clients, For Donors, For Referral Partners, News.
Dr. Karen Jaffe

Dr. Karen Jaffe

Karen Jaffe is a retired Ob/Gyn who was diagnosed with Parkinson's disease at age 49. She practiced medicine for 25 years and cared for countless women and their babies. Her current experience as a patient has given her a new perspective on medical care, now from the other side of the patient fence.