A coalition advocating for patients with Parkinson's disease is looking to fund the creation of a statewide needs assessment. It’s part of a Connecticut law that passed in 2024, but hasn’t been funded by the state.
Reggie Stankaitis spearheaded the Connecticut Parkinson's Disease Coalition, and brought a set of recommendations to the legislature while the National Plan to End Parkinson’s was being considered by Congress. She has lived with Parkinson’s for 14 years, after being diagnosed at age 60.
Stankaitis said she was impressed by the national bill, which was signed into law in 2024, but was concerned it would take a while to trickle down to the states. Something needed to be done in Connecticut, she said.
“I didn't want to curl up into a ball and sit on the sofa and wait for me to die,” Stankaitis said. “I wanted to be able to do something.”
The bill originated in the Public Health Committee, which is co-chaired by State Sen. Saud Anwar (D-South Windsor).
“We feel some of these illnesses require a support from the state,” Anwar, who is also a medical doctor, said.
That data could help identify disparities in care and resources across Connecticut, according to Cristina Colón-Semenza, who is part of the coalition and is a neurologic physical therapist and assistant professor in University of Connecticut’s Kinesiology Department.
“The needs of each of these regions might be really different,” she said. “And we don't want to put one blanket intervention that maybe doesn't meet the needs of everybody.”
Those needs could range from caregiving to child care. Needs can also include meal preparation, medical equipment, exercise programs and nutrition programs, Colón-Semenza said.
The measure passed the legislature almost exactly two years ago. However, the state hasn’t yet budgeted money for the assessment, which is directed to be done by the Department of Public Health (DPH).
"The law was passed without dedicated funding, so the registry has not yet been set up," a DPH spokesperson said in an email. “Because no budget was allocated to support it, the Department has not been able to move forward with its development.”
In 2025, House lawmakers advanced a bill that would have established an account to fund the Department of Public Health’s research into Parkinson’s disease, at $500,000. The state Office of Policy Management voiced concern that the funding wouldn’t be compliant with the state’s constitutional and statutory spending cap.
The state Senate didn’t call the bill for a final vote before the session ended.
According to the Department of Public Health, over 20,000 people in the state have Parkinson’s, and it is the second most common neurodegenerative disease. The most common is Alzheimer's.
“Most of the neurodegenerative diseases have some sort of dementia involved with it,” Stankaitis said. “I think that's probably one of the scary things that I've learned from all this, is like, ‘Oh, my God, I'm going to get dementia at some point in time.’”
The coalition is collaborating with the CT Alzheimer's Disease and Related Dementias group, which has funding from the Centers for Disease Control and Prevention and recently created a “Guide for Navigating Dementia Care” for caregivers.
Colón-Semenza says the coalition is looking for alternative sources to fund the work, such as from UConn and public donations, but she said the science funding cuts by the Trump administration have been, “extremely disheartening, to put it mildly.”
She’s optimistic more globally.
“I'm hoping that we can all agree that it is worthy of the funding to support the science,” Colón-Semenza said. “And bring an end to the disease and help those individuals who are living with the disease have improved quality of life now.
Looking to the future, Stankaitis hopes to get a bill passed in the legislature to also establish a Parkinson’s Disease Task Force. She’s also looking to make the coalition its own nonprofit.
“We're gonna move forward,” Stankaitis said. “No matter what kind of funding we have, we are going to move forward.”
