Ann Hanley wants to raise $5 million in 2018 for the University of Kentucky’s Parkinson’s disease program and its promising Deep Brain Stimulation Plus program, a surgical procedure.
That’s right: $5 million.
The irony is that Hanley, who has had Parkinson’s for more than 11 years, has never had the surgery. Until recently, her lack of success with her medications for Parkinson’s would have disqualified her.
But Hanley has already raised hundreds of thousands of dollars for the program, which teams Deep Brain Stimulation surgery with a nerve tissue graft taken from the patient’s ankle.
Parkinson’s is a degenerative disease that damages and eventually destroys neurons in the brain, causing muscle rigidity and tremors, and difficulty moving. About one million Americans have the disease, according to the Parkinson’s Association.
Hanley’s husband, David, is general manager of WinStar farm in Versailles. They have three grown children; one daughter, inspired by her mother’s work, is studying music therapy at UK.
Winstar owner Kenny Troutt and his wife, Lisa, recently donated $100,000 to the Ann Hanley Parkinson’s Research Fund, which funds UK’s work.
Hanley raised $300,000 through a benefit with the Thoroughbred industry, “Night for a Cure,” which Fasig-Tipton, Coolmore farm and WinStar Farm hosted in 2016. Hanley, who recently became an American citizen, raised $200,000 from Irish farming interests simply by putting out the word that the money was needed.
She has also become a sort of companion for patients who come to UK diagnosed with the disease. She goes to appointments with them, gets to know their families, offers information and help — and will even go into surgery with the patient. If they want prayer, she will pray with them. If they need reassurance, she will give them a kiss on the forehead. When the outcome is positive and the patient walks as before, in smooth movements with no tremors, she shares the delight.
Hanley knows how isolating Parkinson’s is: Sociable people fear contact with others and withdraw, she said. The unpredictability of muscle movement can be daunting. Brushing teeth “is a nightmare,” Hanley said. “Every individual task becomes a big mountain to climb.”
Her volunteer job evolved as Hanley gained experience. At her first surgery observation, she was wearing a protective gown and mask and standing in the corner. Later, as she felt more comfortable and was in surgery with patients who were awake during the procedure, she approached the patients themselves, distracting them during some anxious moments.
“I come home, it’s such a tremendous sense of satisfaction, that feel-good vibe knowing I’ve been able to help someone today,” Hanley said.
Despite her crusade for funds to expand the availability of Deep Brain Stimulation Plus, Hanley, 60, has not had the surgery — yet. She is scheduled to undergo the procedure in April.
Before Hanley was diagnosed with Parkinson’s 11 years ago, she had noticed trouble swinging her right arm. It seemed heavier than the other arm.
A runner, she started wearing a sling so that the rigid arm bothered her less while running.
She rejected the possibility that she had Parkinson’s. She went to the Cleveland Clinic to Duke Health to the University of Louisville. She took medicine to combat the Parkinson’s symptoms. It did not work. Then she fell into depression, and her eyes tear up when she talks about that.
“It’s not the wobble or tremor, it’s what’s happening on the inside that’s worse,” Hanley said. “I realized I had a life, I had a family, I need to do something worthwhile. ... You’re either going to have to sink or swim. I decided to swim.”
Eventually Hanley, landed at the University of Kentucky, where she met Dr. Craig van Horne, a recently arrived neurologist. Van Horne had a new procedure called Deep Brain Stimulation Plus, using the often-successful surgery to help Parkinson’s patients lessen their symptoms and combining it with a graft of nerve tissue from the patient’s ankle. The aim is to stop or perhaps even reverse the spread of the disease.
Hanley saw her opening: “I knew I could bridge a gap.” That she did by becoming the patient’s advocate and confidante, and learning how to market the Deep Brain Stimulation Plus procedure to raise money.
Hanley said she is impatient for Dr. van Horne’s procedure to become a standard treatment. She recalls a conversation in which van Horne said that the surgeries would have to temporarily stop. She was dumbfounded.
“I looked at him and said, ‘I don’t have a lifetime. The patients don’t have a lifetime,” Hanley said. “The one constant is that the clock is ticking.”
Van Horne told her that proceeding with additional surgeries would require $250,000. Hanley said she could raise the money.
She called “a couple of friends in Ireland.” Within 10 days, various auctions from her farm friends had raised $200,000. That meant 15 more surgeries, “but it just wasn’t going to be enough.”
Hanley is confident she can make her $5 million fundraising goal.
“I have an inner confidence, and a peace, that makes me believe in myself. ... It’s about putting yourself out there no matter what anybody’s going to say. That’s what has given me back my confidence.”