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Research CREATING CRITICAL INFRASTRUCTURE TO SUPPORT POLICY WORK by ALLYSE FALCE GALVANIZING THE PARKINSON’S COMMUNITY In March, The Michael J. Fox Foundation (MJFF) and the Parkinson’s Action Network (PAN) announced the dissolution of PAN and MJFF’s decision to take on PAN’s mission to bolster public policy and advocacy efforts serving the Parkinson’s community. Our greatest resource in furthering a PD policy agenda remains working with people with the disease and their loved ones. A network of 140 policy volunteers (formerly PAN State Directors and Assistant State Directors) is helping shape our advocacy initiatives and educate policymakers on the need for PD research and care support. In the last decade, the state of Parkinson’s disease (PD) drug development has evolved significantly, and as a result, so have policy priorities. More treatments in clinical testing and increased understanding of the nuances of this disease require an integrated research and policy strategy to work with lawmakers and payers who dictate access to therapies. Additionally, federal funding must keep pace with research needs, emerging opportunities and support services to improve the community’s quality of life. “Patients and loved ones provide a critical perspective in all aspects of the legislative process regarding Parkinson’s disease policy initiatives,” said Carey Christensen, an MJFF Patient Council member and longtime policy advocate. “It’s important that we build relationships with our elected officials so we have champions on Capitol Hill and in state and local governments.” The MJFF community at large is already speaking up. In the last five months, you’ve sent over 15,000 emails to members of Congress asking them to take action on important policy issues. The Foundation will continue to inform the community and ask for its support when key legislation makes its way to Capitol Hill. The Foundation is in the process of building its programmatic infrastructure to support this work, and we hope you will join us in making your voice heard (see box, opposite page). BUILDING AN INTERNAL POLICY TEAM Because public policy exerts a direct effect on the scope of PD research and the quality and availability of patient care, staff from several existing Foundation teams have transitioned to work on policy issues. The Foundation also has established several councils to further collaboration with the Parkinson’s community on policy matters, including senior leaders of national, regional and state PD organizations and individuals with experience in advocacy, government and politics. In addition, the Foundation has defined new roles devoted to policy. Ted Thompson, JD, former CEO of PAN, joined MJFF as senior vice president of public policy in June. In September, Brittany Meyer began as an associate director, focusing on research and drug development and approvals. In the coming months, MJFF will work to articulate a community-informed action plan for Parkinson’s policy. With internal staff, external experts and a passionate Parkinson’s community, we are confident in the sound structure that exists to advance our policy goals. MJFF is working to hire an additional associate director who will work on access-to-care issues and coordinate with the bodies that regulate Medicare, government benefits and other resources essential to patients’ well-being. Learn more about how public policy can speed a cure at michaeljfox.org/policy. Research “ We will open doors that were previously closed” Monnie Lindsay, JD, is an Omaha-based lawyer at Georgetown University Law Center with a specialty in insurance and health law who has lived with Parkinson’s for more than two decades. Monnie with former representative Lee Terry (R-NE) How did you get involved with PD policy work? Was it influenced by your professional and personal experiences? A member of the newly formed MJFF Public Policy Council — which comprises experts who have extensive government experience and advise the Foundation on policy matters — Monnie talks about the past, present and future of her policy work with the Parkinson’s disease (PD) community. MAKE YOUR VOICE HEARD After being diagnosed with Parkinson’s at age 38, just four years out of law school, I developed a passion for supporting our community. (continued on page 18) TAKE ACTION Contact your elected officials and let them know how public policy impacts the Parkinson’s community. Visit our website for a list of bills currently moving through Congress that could affect patients, families and Parkinson’s researchers. You can also compose your own message to send to your U.S. senators and representatives. Take action now at michaeljfox.org/congress. 8 9 The Fox Focus Fall/Winter 2016