By Todd Cohen
CHARLOTTE, N.C. — Anne Udall is pushing for change.
Parkinson’s Disease, a progressive neurological disorder that disables the body’s motor functions, killed her father, Morris Udall, the late Congressman from Arizona and presidential candidate.
Udall, executive director of the Lee Institute and a former assistant superintendent in the Charlotte-Mecklenburg Public Schools, serves as founding chair of the Parkinson’s Action Network, an advocacy group in Washington, D.C., that wants the federal government to spend more on Parkinson’s research
“It is a disease that researchers believe they’re very close to cracking,” Udall says. “Scientists say the major thing holding them back from really getting to the answers is money.”
As chair of the Parkinson Association of Mecklenburg County, she also is spearheading the group’s efforts to help North Carolinians better understand the disease, and to be a stronger advocate.
Parkinson’s afflicts roughly 1 million Americans, 40 percent of whom – like the actor Michael J. Fox — are under age 60.
Unlike Alzheimer’s disease, which destroys the brain while the body still works, Parkinson’s destroys the body while the brain still works.
Yet Parkinson’s research gets less federal funding, roughly $41 per patient, than do most other disorders, according to the Parkinson’s Action Network.
Founded in 1983, the Parkinson Association operated as a program of Community Health Services until May, when it became a separate nonprofit.
Debbie Huffman, who was the association’s part-time executive director, now is working full-time, thanks to a $27,000 grant from United Way of Central Carolinas.
And the association, which provides information, support and referrals for 500 families in Mecklenburg County, aims to expand its work and extend its reach, says Huffman, a veteran nonprofit fundraiser.
In the past year, the association launched an effort to increase awareness about “early onset” of the disease, which can affect young and middle-aged adults with slight tremors or problems with equilibrium or walking.
The association now aims to help low-income people better understand Parkinson’s.
“We believe a lot of people are not being diagnosed for the disease,” Huffman says.
While the American Parkinson’s Disease Association in New York City has chapters in Asheville and Durham, she says, the Mecklenburg group is the only Parkinson’s organization based in North Carolina, and wants to become the state’s best source of Parkinson’s information.
It also plans to step up efforts to help North Carolinians understand the need for greater federal funding for Parkinson’s research, says Huffman.
The association covers its $107,000 annual budget by raising money from individuals, special events, membership fees and grants, and with income from a $500,000 endowment at the Foundation for the Carolinas it created through a 1997 bequest.
To give Huffman more time for fundraising and advocacy, Udall says, the board and volunteers will get more involved in delivering services.
The idea, she says, is to raise money by involving patients and their family members and loved ones in the organization.
“We want to get people passionate first,” Udall says, “and help them understand that Parkinson’s impacts a lot of people.”