Ending Parkinson’s disease — they are words that those who live with the progressive brain disorder have been waiting to hear. While there is no cure available yet, public officials say they have a plan to hopefully set us on the right path.
More than a million Americans are believed to be living with Parkinson’s disease, and now the federal government for the first time is making a coordinated effort to try to prevent and cure the progressive brain disorder.
“You never know what you’re going to be like when you wake up in the morning,” Mark Burek said, a Capital Region native living with Parkinson’s since 2007. “You wake up and something always hurts.”
In addition to the aches and pains altering his active lifestyle, including a daily four-mile run and work as a mail carrier, Burek noticed something alarming in his community.
“I looked out my front door and there was nothing there for the Parkinson’s patient,” he said.
Burek’s diagnosis launched not only a battle against a terrible disease but a mission of advocacy. He’s created Hope Soars, an organization dedicated to raising awareness about his disease, expanding research and programs across the Capital Region.
“It builds a sense of camaraderie,” he explained. “There is nothing worse than going someplace, not knowing anybody and not being able to relate.”
He’s also worked closely with Rep. Paul Tonko, who has championed the National Plan to End Parkinson’s Act in an effort to help prioritize fighting Parkinson’s on the federal level. The bill has passed in Congress, and been sent to the president.
“This bill will bring federal stakeholders and non-federal experts to implement a national plan to prevent and cure the disease,” Tonko said.
The congressman said the advisory council’s work will also address the weight loved ones carry after a diagnosis.
“There is nothing more difficult than watching someone struggle with a disease that you can’t fix,” Burek’s wife, Ann, said.
It would also back research across the country, including in New York.
“It really is a game-changer,” said Dr. Damian Shin of Albany College’s Department of Neuroscience. “You’re going to be able to leverage big resources to provide and accelerate advances for therapeutics.”
