| Today, on World Parkinson’s Disease Awareness Day, legislators including State Senator Saud Anwar (D-South Windsor) and State Representative Cristin McCarthy-Vahey (D-Bridgeport, Fairfield), Chairs of the Public Health Committee, State Representative Frank J. Smith (D-Milford), State Senator Julie Kushner (D-Danbury), Senate Vice Chair of the Public Health Committee, State Senator Matt Lesser (D-Middletown), Senate Chair of the Human Services Committee, former Secretary of the State Denise Merrill and representatives from organizations including Regina Stankaitis of the Connecticut Coalition To End Parkinson’s Disease and Zach Hardy of the Michael J. Fox Foundation gathered in the Legislative Office Building to reaffirm their goal and efforts to find a cure for Parkinson’s.
Several of those assembled told their personal stories of how their lives have been touched by Parkinson’s Disease. Rep. Smith discussed his diagnosis of Parkinson’s in 2023, spurred by a constituent seeing him on television and asking if he’d been tested. Rep. McCarthy Vahey and Sen. Kushner talked about histories of Parkinson’s in their families, as did . Stankaitis discussed her experiences living with Parkinson’s for years and the impact the disease has had on her life. Merrill discussed caring for her husband as his disease progressed over time.
The event was livestreamed on the Connecticut Network and is available for on-demand viewing.
This year, legislators are considering new steps to support those with the disease, which impacts tens of thousands of Connecticut residents and sees up to 5,000 new diagnoses nationally every month. Senate Bill 1, one of the most impactful bills proposed in the 2024 legislative session, includes provisions for the creation of a healthy brain initiative studying conditions affecting the brain including Parkinson’s Disease and the creation of a statewide registry of data on Parkinson’s Disease, as well as an oversight committee to review data and find better ways to improve quality of care for patients diagnosed with the disease.
“The countless lives impacted by Parkinson’s Disease reinforce our need to continue to expand our efforts to battle it and find a cure,” said Sen. Anwar. “It’s encouraging that SB1 this year will advance the data we collect and expand the depths of research available in an effort to help those suffering. I’m grateful to our many colleagues supporting this effort and look forward to passing this bill.”
“As the child of a father who died as a result of Parkinson’s Disease, I and proud and grateful to join this amazing coalition of advocates, officials, and legislators to continue our collective efforts to treat, and one day cure, Parkinson’s Disease,” Rep. McCarthy Vahey said. “By focusing on the impact Parkinson’s has on the brain, collecting a much more sophisticated level of data collection on the disease, and constantly looking for ways to improve our research and quality of care, SB 1 moves us closer to finding a cure for this disease and helping the countless people living with it. Thank you to my colleagues, the Connecticut Coalition to End Parkinson’s Disease, and the Michael J. Fox Foundation for working with us toward a brighter future. I look forward to passing this bill and continuing our work of curing Parkinson’s Disease.”
“This day serves as a global call of action, uniting people not just in the United States but around the world who have been impacted by Parkinson’s to stand up,” said Stankaitis. “Parkinson’s Disease is more prevalent than most people think; having it is not just a physical problem but a psychological one. In 2014, my facial expressions started to change, my right arm didn’t move when I walked and my upper body became rigid. I was diagnosed with Parkinson’s and my life changed. All my plans for my future changed. I was very athletic, but I can no longer run and can barely walk. When I began falling I was scared; at first, I thought I stumbled or was clumsy, but I kept on falling. Because I can’t climb stairs, I was forced to sell my house and move to a ranch, but I will not be able to live there much longer. There are many things I can no longer do, but I have a choice; I can sit, feel sorry for myself and give up, or I can use my voice to fight and make people aware of this terrible disease. Please stand up, fight this disease for your friends, family and neighbors. There is no cure for Parkinson’s, but we can still find one. It may be too late for me, but it’s not too late for you.”
“At The Michael J. Fox Foundation for Parkinson’s Research, we’re focused on improving diagnosis, accelerating treatments and finding a cure for Parkinson’s disease,” said Hardy, state government relations officer for The Michael J. Fox Foundation. “During Parkinson’s Awareness Month and on this World Parkinson’s Day, we are grateful to our legislative partners in the General Assembly, including Senate Majority Leader Bob Duff and the Co-Chairs of the Public Health Committee, Senator Saud Anwar and Representative Cristin McCarthy Vahey, who are leading the effort to pass SB.1. This comprehensive piece of legislation includes provisions to establish a statewide Parkinson’s research registry and directs the Department of Public Health to develop a healthy brain initiative. Passing this bill will not only support people living with Parkinson’s and their families in Connecticut today, but also contribute to the global effort to find a cure for this disease. We look forward to continuing to work in partnership with patients, caregivers, policymakers, researchers, clinicians and others to do everything we can to end Parkinson’s.”
In public testimony supporting Senate Bill 1, Hardy said the proposed legislation’s initiatives to study and research the disease will help fill gaps in current knowledge. The registry and initiative would help researchers determine best practices for causes, efficacy and inequities in health care, also helping to identify high-risk groups and support patient contact studies.
Connecticut would become the 11th state to establish a Parkinson’s Disease research registry upon the bill’s passage, Hardy said. This would help fight a disease responsible for at least $617 million in medical costs each year in Connecticut.
The Coalition To End Parkinson’s Disease also seeks to create a state advisory council to develop recommendations for priority policies and actions for the prevention, management and eventual eradication of Parkinson’s Disease. It also seeks to promote and distribute educational resources, especially to underserved and marginalized communities; implement evidence-based solutions to support prevention of the disease; and provide recommendations to improve current therapies, diagnostics, interventions and more to support patients and their care partners.
Parkinson’s Disease is the second-most common neurodegenerative disease next to Alzheimer’s Disease and is the 14th-leading cause of death in the United States. The disease is diagnosed in an individual every nine minutes, meaning nearly 5,000 people each month learn they have Parkinson’s.
Caption: Sen. Anwar, at podium, stands amid many gathered in the name of fighting Parkinson’s Disease. |
