Parkinson’s Support in the Carolinas
Parkinson’s disease is a progressive neurological disorder that significantly affects a person’s movement, balance and mood. More advanced stages can result in fatal complications. While there is no known cure, there is hope in the battle against the life-altering disease. New research, better access to care and expanding community support are reshaping the future of Parkinson’s.
“There is a lot of recent momentum in Parkinson’s research and care,” said Christie Brum, senior development manager with the Carolinas Chapter of the Parkinson’s Foundation. “Genetics research, growing education and support are furthering advancements in the disease and improving quality of life for those with Parkinson’s.”
How Common Is Parkinson’s Disease?
In the Carolinas alone, it is estimated that 56,000 people are living with Parkinson’s disease, and nearly 90,000 Americans will be diagnosed this year. To put it in perspective, that’s about one person every six minutes. As medical and genealogical research grows, so do the chances for treatments to mitigate effects and prolong better health.
Parkinson’s Virtual Biotech and Faster Therapy Development
Through a partnership with the Parkinson’s Foundation and Parkinson’s UK, the Parkinson’s Virtual Biotech provides funding to develop new therapies and medications with the goal of making them available in just years, rather than decades.
PD GENEration Genetic Testing and Personalized Care
Another promising initiative is the Parkinson’s Foundation’s PD GENEration study, a global initiative to make genetic testing and counseling accessible to every person with Parkinson’s. The blood test helps identify genetic variants that may influence how the disease develops and how it responds to treatment.
“Genetics is opening the door toward more tailored medicine,” Brum explained. Having more information on the related genetics will eventually allow doctors to match people with therapies that work best for their specific biology, rather than a one-size-fits-all approach.
More than 30,000 people worldwide have already participated in PD GENEration, including over 1,200 in the Carolinas. The information is fueling clinical trials, accelerating drug development and helping researchers better understand the disease’s many subtypes.
Gaps in Care and Access to Specialists
At the same time, studies are revealing critical gaps in care, particularly for people in rural areas. U.S. Medicare data indicated that many individuals with Parkinson’s never see a movement disorder specialist and may lack access to physical therapy, speech therapy or mental health support that can significantly improve quality of life.
“That’s where the community piece becomes just as important as the science,” Brum said.
Programs, Education, and Community Support
The Parkinson’s Foundation Carolinas Chapter works to close those gaps by funding local research, supporting care partners and offering free educational and wellness programs throughout North Carolina and South Carolina. The chapter hosts virtual and in-person events, support groups and community initiatives such as Moving Day to connect families and raise awareness.
Parkinson’s Foundation Helpline
The Parkinson’s Foundation also operates a free helpline staffed by specialists who provide personalized answers, referrals and emotional support. You can speak to a real person when you call 800-473-4636, Monday through Friday from 9 a.m. to 7 p.m., Eastern time.
“People are often overwhelmed, especially when newly diagnosed,” Brum said. “Our message is simple: We’re here to help make life better for people with Parkinson’s. We want to be a trusted source for education, care and research and a place people can turn when they need guidance.”
Where Hope Meets Action
From biotech partnerships aimed at delivering new treatments in the near future to local programs ensuring no one faces Parkinson’s alone, the field is evolving on multiple fronts.
“If you’re managing symptoms, newly diagnosed or a care partner, reach out to us,” Brum smiled. “We’re here to help you.”
By Anne Toole
