By Emily Williams
Founded in 1978, the Parkinson Association of Alabama has had its ups and its downs, but a new feature is in the works that officials hope will take the organization to new heights.
Over the past few years, the board of directors and Executive Director Mary T. Miller have worked to breathe new life into the PAA. Miller, of Vestavia Hills, took on the position of executive director in 2015 and has since run the association’s day-to-day operations as the single staff member.
During a Sept. 21 reception at Burr & Forman, board President Jamie Laney announced the addition of a new junior board and a new statewide virtual resource center for Parkinson’s patients.
The American Parkinson Disease Association has contributed $40,000 to jumpstart the resource center project.
“What has been a longtime need and a longtime idea, we are finally able to bring to the state,” said Laney.
The resource center will be the first of its kind in Alabama, connecting patients statewide with specialists, support groups, exercise classes and more. Its purpose is not only to educate patients on the resources available to help manage Parkinson’s disease, but also to provide health care professionals with a network to refer patients to programs and specialists.
Parkinson’s is not a disease that is widely understood, Miller said, and doctors who aren’t familiar with it are hard-pressed to find ways to help their patients.
“Some people may be diagnosed by a doctor who can refer them to a neurologist,” Miller said. “But for many people, they go see their primary care doctor and that doctor may be able to tell them they have Parkinson’s, but beyond that they don’t know what to do.”
In its initial stages, the PAA’s resource center will have one care navigator, who will be hired by the end of this year. Their duty will be to travel throughout Birmingham and the state introducing the program to neurologists and other specialists who will be listed on the center’s website for patients and other professionals to find.
“What’s the first thing we do to find information? We use Google,” Laney said. “And what happens when we Google?” Laney said patients are overrun with information that either isn’t useful or isn’t affordable.
The organization is ramping up for a capital campaign to raise the $250,000 projected to be needed to support the center for the first several years.
“We, the PAA, will own this,” Laney said. “So, we can customize it to the needs of a Parkinson’s patient.”
The organization will continue to fund the PAA Endowed Professorship in Neurology and pre-doctoral scholarships in UAB’s Neurology Department.
Miller noted that the junior board has had its first meeting and plans to host fundraisers throughout the year.
For more information, visit parkinsonalabama.com.