Betty Josey

Betty and Clinton Josey

Pictured: Betty and Clinton Josey

Betty Josey’s longtime wish was to donate money to causes meaningful for her. Before passing away last year, she fulfilled her wish with a bequest of $250,000 to support research led by Rodney Falk, MD, director of the Amyloidosis Program in the Brigham’s Heart & Vascular Center.

“Giving back was always in my mom’s DNA,” says Betty’s daughter, Melissa Bookhout. “She was deeply grateful for the exceptional treatment her husband—my dad, Clinton―received at the Brigham. She wanted to honor that.”

In 2008, Clinton was diagnosed with amyloidosis after doctors in Texas identified a buildup of amyloid proteins in his heart tissue, impeding his heart’s function. At his doctor’s suggestion, the Josey family began traveling to the Brigham so Clinton could receive treatment from the internationally renowned Amyloidosis Program.

Once his diagnosis was confirmed, Clinton enrolled in a phase 2 clinical trial of tafamidis, then an investigational drug. Clinton was among a few patients in the trial who regularly received the drug for 10 years before it was approved by the U.S. Food and Drug Administration. Now 96, Clinton has far exceeded his initial lifespan projections.

“As my dad continued to get better, my mom fell in love with the Brigham and every person she came across there,” says Bookhout.

Betty’s bequest supports Falk and his Amyloidosis Program colleagues’ efforts to advance research, diagnostics, clinical guidelines, and training future amyloidosis specialists. The team’s promising studies include developing and testing a non-invasive diagnostic tool and using biobank data to inform new targeted therapies.

“Diagnosing patients earlier and developing novel care techniques are two of our primary goals, and this gift helps tremendously,” Falk says. “With my great appreciation of Betty and thanks to her family, a growing number of patients can manage amyloidosis as a chronic condition instead of a life-threatening disease.”