Last week, the Parkinson’s Foundation and The Michael J. Fox Foundation presented the 2018 Parkinson’s Advocacy Awards to six individuals. The awards shine a spotlight on efforts to further policies that benefit people with Parkinson's, their families and care partners. During the ceremony, which took place at the Parkinson's Policy Forum, advocates, scientists and a lawmaker were recognized for their service to the Parkinson's community. The 2018 award winners are highlighted below.
Social Media Advocacy Award
Recognizes an advocate who furthers Parkinson’s policy goals by harnessing the power of social media.
Charles Brown, Massachusetts
Charles is a member of a highly active group of advocates in Massachusetts. He authors a quarterly newsletter summarizing their work and sends it to lawmakers and Parkinson’s disease (PD) community members. Charles frequently uses Facebook to update other advocates on the efforts of the Massachusetts team and encourage the wider community to speak up for Parkinson’s research and care. He helped establish a state caucus on Parkinson’s disease to educate local lawmakers on the needs of Massachusetts residents with PD. In 2017, Charles responded to over 20 policy action alerts, maintaining frequent lines of communication with his legislators.
Year-round Advocacy Award
Presented to an individual who exhibits exemplary advocacy efforts throughout the year.
Kevin Mansfield, Oregon
Kevin is a long-time Parkinson’s advocate who travels his home state to speak at support groups, fundraisers and local community health fairs on the importance of taking action to advance the policy needs of people with Parkinson’s and their loved ones. He works with a number of local and national PD organizations to make the largest impact possible. Kevin conducts frequent in-district visits with his lawmakers and attends their town hall meetings. Knowing that advocacy is a year-round activity, Kevin doesn’t stop there. He stays in close contact with his policymakers and sends them regular emails on the importance of federal research funding and other priorities.
Milly Kondracke Award for Outstanding Advocacy
Also known as “advocate of the year,” this award is given to a person who embodies the strength of spirit and commitment to advocacy that Milly Kondracke demonstrated every day. Throughout her life, Milly tirelessly and effectively advocated for increased federal investments in PD research. On behalf of millions of advocates across the country, she was the public face of Parkinson’s on Capitol Hill. She humanized PD and educated lawmakers on the disease. Milly was diagnosed with Parkinson’s in 1987 and passed away of complications from the disease in 2004.
Leslie Peters, Colorado
Leslie works with a number of different Parkinson’s organizations to spread information about the disease and advance progress toward a cure. She is a member of an active group of advocates in Colorado who take action on Parkinson’s policy issues and reach out to their lawmakers on a regular basis. They frequently conduct in-district congressional meetings with their elected officials, and they keep local PD community members informed of the latest policy developments through a newsletter. Leslie and her husband Steven give back any way they can, and they often spend time talking to newly diagnosed individuals to help them learn more about the disease and get involved in the PD community.
Morris K. Udall Award for Public Service
Given to individuals who have made important contributions to public policy with humor, grace and dignity, in the spirit of Morris “Mo” K. Udall. Mo served in the House of Representatives for 30 years and was a candidate for the Democratic presidential nomination in 1976. During his career, he infused American politics with his singular style of humor, grace and dignity. Many of today’s leaders — on both sides of the aisle — have cited Mo as a role model. He was diagnosed with Parkinson’s in 1980 and died of complications from the disease in 1998.
Francis Collins, MD, PhD, Director of the National Institutes of Health
Dr. Francis Collins has been Director of the National Institutes of Health (NIH) since 2009. He is a stalwart champion of medical research and innovation. He is highly involved with the NIH’s BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative and the All of Us Research Program, which seeks to advance personalized medicine. Due to his efforts, the NIH established the Accelerating Medicines Partnership (AMP) program to advance the development of new treatments for select diseases. In January 2018, AMP announced a new program area focused on Parkinson’s disease. From 1993 to 2008, Dr. Collins served as Director of the National Human Genome Research Institute at the NIH and led the international Human Genome Project. Dr. Collins has received the Presidential Medal of Freedom and the National Medal of Science.
Walter Koroshetz, MD, Director of the National Institute of Neurological Disorders and Stroke
Dr. Walter Koroshetz has been Director of the National Institute of Neurological Disorders and Stroke (NINDS), an institute within the NIH, since 2015 and previously served as Deputy Director. He oversees the largest public portfolio of Parkinson’s research and is a supporter of issues of importance to the Parkinson’s disease community. Dr. Koroshetz was instrumental in establishing the AMP program for Parkinson’s disease, and he plays a leadership role in the BRAIN Initiative. Dr. Koroshetz oversees the eight Morris K. Udall Centers of Excellence for Parkinson’s Disease Research across the country.
Representative Gus Bilirakis of Florida
Congressman Gus Bilirakis represents the 12th district of Florida. He is serving his sixth term in the House of Representatives and is a long-time member of the Congressional Caucus on Parkinson’s Disease. As co-chair of the Caucus, he works to educate lawmakers on the latest issues impacting people with Parkinson’s and their loved ones, and he supports legislation to further PD research and care. Rep. Bilirakis serves on the Health Subcommittee of the House Energy and Commerce Committee and is Vice Chairman of the House Veterans Affairs Committee. These two committees oversee major agencies relevant to our community: the Food and Drug Administration and the Veterans Health Administration.