Michael J. Fox Foundation CEO visits Lewes Parkinson’s group
The Parkinson’s Education and Support Group of Sussex County hosted two special guests during its August meeting at the Lewes Public Library.
Debi Brooks, CEO and co-founder of the Michael J. Fox Foundation for Parkinson’s Research, and Betsey Coulbourn, state director in the office of U.S. Rep Lisa Blunt Rochester, D-Delaware, joined more than 65 group members to discuss nationwide initiatives to advance research and support for the movement disorder.
During the meeting, Brooks emphasized that the foundation structures all its activities around one urgent goal: expediting medical breakthroughs that directly enhance the lives of individuals living with Parkinson’s disease. Brooks touched on ways for people with Parkinson’s to participate in research, such as the Parkinson’s Progression Marker Initiative clinical study and the Fox Insight online study through the foundation.
Brooks also highlighted a major breakthrough in early diagnosis recently announced by the foundation: Scientists have developed a test that can detect the biology of Parkinson’s in the brain cells of living people, and much earlier than was possible before. This long-sought change will have major impacts on research – most importantly, accelerating the development of new and better treatments. Members of PESGSC were bolstered by her words, and many left the meeting with renewed hope and inspiration.
Coulbourn delved into the bipartisan National Plan to End Parkinson’s Act, outlining its potential to drive substantive progress in preventing and curing Parkinson's disease. The bill, accessible at Congress.gov, proposes the establishment of an advisory council overseen by the secretary of Health and Human Services. The council would work to draft and influence policies to increase federal funding for Parkinson’s research, improve access to care, and drive public-private partnerships to advance Parkinson’s therapeutic development and care initiatives. Coulbourn encouraged group members and their families to continue making their voices heard in support of Parkinson’s research. There is currently no cure for Parkinson’s disease, and supportive treatments to address symptoms of the condition are costly.
A 2019 study conducted by the Michael J. Fox Foundation showed that the annual total cost to individuals, families, and the U.S. government is nearly $52 billion, with half of that cost attributable to direct medical costs like hospitalizations and medications. The economic burden is steep, and a cure is needed now more than ever.
Parkinson’s disease is a progressive brain disorder that affects the nervous system and can cause uncontrolled movements like tremor or difficulty with balance, as well as other physical, mental and emotional symptoms. Statistics show that more than 1 million people in the U.S. have been diagnosed with Parkinson’s, and at least 2,000 of them live in Delaware. With a higher number of seniors and retirees, Sussex County is home to a concentrated population of people with Parkinson’s and their loved ones. The local group was founded in 2009 to support this community.
With more than 300 members – which includes those with Parkinson’s, their caregivers, and community members across Sussex County – PESGSC holds regular support groups and educational meetings, and sponsors daily fitness classes, all designed to aid and encourage those living with the disease. Help is available, whether someone has been recently diagnosed with Parkinson’s, is a long-term survivor, or is a caregiver seeking guidance.
“Our support group welcomes you with open arms,” said Amanda Peters, PESGSC board president. “We offer a network of support, information and understanding that can positively impact your journey with Parkinson’s disease.”
The group’s impact on the local Parkinson’s community is growing. This recent visit from Brooks and Coulbourn comes on the heels of a large fundraising effort put on by the group: a showing of the Parkinson’s-focused documentary “Still: A Michael J. Fox Movie” at the Cinema Art Theater in Lewes. Proceeds from the “Still” event and all other PESGSC fundraisers go directly to supporting the needs of group members.
For those living with Parkinson’s disease, fighting the progressive nature of the movement disorder can feel like an uphill battle. However, groups like PESGSC put support and services at members’ fingertips, reminding them that they’re not alone in their Parkinson’s journey.
The Parkinson’s Education and Support Group of Sussex County is an IRS-recognized 501c3 nonprofit and the largest nonprofit Parkinson’s disease organization in Delaware. The group comes together to improve the lives of those with Parkinson’s disease through exercise, education and support. To join the group or make a donation, go to sussexdeparkinsons.com.
