KNOXVILLE, Tenn. (AP) — Pat Summitt’s fight against Alzheimer’s disease continues, and has even gained momentum since her death.
The former Tennessee women’s basketball coach made sure of that through her efforts the last five years. As soon as she announced her diagnosis in 2011, Summitt vowed to take an active role in leading the battle against the disease that would eventually kill her.
“She looked me directly in the eye, and she said, ‘Joan, I thought I was going to be remembered for winning basketball games, but I hope I’m remembered for making a difference in this disease,'” former Tennessee women’s athletic director Joan Cronan said.
Tennessee is holding a ceremony Thursday at Thompson-Boling Arena to celebrate the life of Summitt, who won eight national titles and 1,098 games with the Lady Volunteers. Summitt died June 28 at the age of 64. A private ceremony was held on June 30.
Alzheimer’s experts say there’s no doubt Summitt’s impact will continue.
Her willingness to go public with her diagnosis helped motivate others to do the same and her advocacy helped raise more money to fight the disease.
Federal funding for Alzheimer’s climbed from $448 million in the 2011 fiscal year to $991 million in 2016, according to the Alzheimer’s Association. It is impossible to measure how much of that can be directly tied to Summitt, though her efforts certainly contributed to the increase.
The National Alzheimer’s Project Act that created a national plan to fight the disease was signed into law in January 2011, seven months before Summitt announced she had early-onset dementia, Alzheimer’s type.
“Certainly in the last five years, the amount of support from the National Institutes of Health for Alzheimer’s research has just skyrocketed,” said Allan Levey, the director of the Emory Alzheimer’s Disease Research Center. “Is that all due to Pat? Obviously not. But she was part of that campaign to raise awareness, for sure.”
Perhaps the most tangible evidence of the difference Summitt made will come in December with the opening of the Pat Summitt Alzheimer’s Clinic at the University of Tennessee Medical Center. The clinic will offer Alzheimer’s research while also providing care for patients and providing services for caregivers.
Funding for the clinic is coming in part from the Pat Summitt Foundation, an organization the former coach launched in 2011 to help fight the disease. The foundation has pledged to give the clinic $500,000 in grants for each of the next five years. Patrick Wade, the foundation’s director, said those $500,000 annual grants are expected to continue indefinitely.
“I think it’s going to become a real icon in the southeastern part of the (United) States for Alzheimer’s disease care and research,” said Ronald Petersen, the director of the Mayo Alzheimer’s Disease Research Center in Minnesota.
The effect of having someone as respected as Summitt play such a visible role in the fight against Alzheimer’s is evident by the outpouring of support her foundation has received.
Wade said Wednesday that the Pat Summitt Foundation has received $320,000 in donations since Summitt’s death. That includes about 225,000 in proceeds from the sale of nearly 25,000 commemorative T-shirts.
Petersen gave Summitt her original diagnosis at the Mayo Clinic and now is co-chair of the Pat Summitt Foundation’s medical advisory council. He said the extra attention Alzheimer’s awareness received after her announcement was similar to when President Reagan was diagnosed. Petersen recalled an address Summitt made at a dementia conference in Minnesota.
“People raved about her willingness to do this,” Petersen said. “She maintained a sense of humor as far into the disease as she could. She likened the battle to coaching basketball, and the way the players would react to a challenge on the court is the way she was reacting to dealing with this disease.”
More than five million Americans are living with Alzheimer’s disease, according to the Alzheimer’s Association. Beth Kallmyer, the vice president of constituent services for the Alzheimer’s Association, said about 200,000 have early-onset Alzheimer’s and start developing symptoms before the age of 65.
Levey said people often tend to withdraw or are reluctant to disclose information about their memory problems or their diagnosis after they learn their situation. Summitt instead came forward as a public face of the disease — even continuing to coach for a year after her diagnosis — and showed that Alzheimer’s could affect anyone.
“When we look at public figures, there are very few that have come out publicly and said, ‘I have Alzheimer’s’ and then continued to remain public for a period of time,” Kallmyer said. “The impact of that is significant.
“A disease like Alzheimer’s, there’s still a lot of stigma around it. There are still a lot of people that aren’t talking about it. There are doctors that aren’t diagnosing it. It’s not unlike how cancer was seen maybe back in the ’50s and ’60s. When people started talking about cancer, things got better. People started paying attention to it.”