Say what you want about Lori Alf – she’s a fighter. As a young child, she fought to follow her passion for ice skating even though her parents couldn’t afford lessons. So, she skated on a frozen pond in the backyard of her home in the town of Lewiston, just outside of Buffalo, New York.
When Alf moved to Florida as a wife and mother she fought to open a world class ice skating rink in West Palm Beach. Not a simple task she soon found out. “It’s complicated building an ice rink (in South Florida) with pipes and cooling.” But she not only wanted her daughter Caterina to follow her love of ice skating, she also wanted a place for families to come and enjoy a “safe and clean well-run facility” which at the time didn’t exist in West Palm Beach.
Roughly ten years ago, Palm Beach Ice Works was born. “I love that I can do something for kids. Nothing could replace that,” Alf says.
Skating with the Champions program
But Alf’s biggest fight came in 2009. Running around with her three kids – she refers to herself then as “supermom” – Alf was forced to slow down due to what she thought was bronchitis. After a series of blood tests, the diagnosis was far from that. Alf had advanced stage multiple myeloma – a form of bone marrow cancer – and her blood was 98 percent cancerous.
A doctor told her “it was the worst myeloma he’s ever seen.” Her life depended on a stem cell transplant. After a full year to collect the stem cells needed she underwent the procedure in 2010. It didn’t take. The cancer came back with a vengeance. Every week she needed a chemotherapy concoction just to stay alive. “It became a lifestyle,” Alf says.
On the verge of death, with thoughts of never seeing her children grow up, Alf scoured the internet searching for anything that could help. She came across an experimental treatment at the University of Pennsylvania employing Car-T cell therapy using CD-19, a protein found on the surface of our white blood cells. At the time, this immunotherapy procedure had only been used in the treatment of Leukemia.
Lori Alf was the first patient to experiment with this treatment for multiple myeloma, and was patient number one in a trial conducted at Penn. At the time, in 2014, Mrs. Alf was so frail from undergoing daily chemotherapy and blood transfusions she could barely move her limbs. This trial was her only hope for survival.
This past July, Alf celebrated her three-year anniversary of being cancer-free. “I’m clean to this day,” she says, “and my hope is to bring this to other people.” Her wish may come true – the FDA approved CAR-T cell therapy for leukemia on August 30th of this year and the expectation is approval for the treatment of multiple myeloma is not far behind.
“I am forever grateful for University of Pennsylvania and their commitment to patients. We have held fund raising events at Palm Beach Ice Works to promote this therapy and hope to continue to host more in the future.”
Alf, a slender blonde, credits her successes and her ability to overcome obstacles in two words, “true grit.” She continues to run Palm Beach Ice Works where she “teaches kids hard work while having fun doing it.” Still a fighter, she shows no signs of ever slowing down. She credits her own experience as a young ice skater to her success in life. “No matter how many times I fall down, I always dust off and push forward.”
In a matter of fact tone she adds, “Learning how to work hard and be tough – that’s the definition of Lori Alf.”
