Family and Friends Dreamed of a Clinic—and Changed ALS Care for Good

When Richard Dart was diagnosed with ALS in the early 1990s, he was initially angry and afraid. An incurable disease, ALS, or Lou Gehrig’s disease, causes the progressive loss of muscle control. Patients gradually become weaker, losing the ability to stand, walk, or even speak. Even as they decline physically, these patients often stay sharp mentally, able to reason and problem solve as usual. As his speech began to fail, Dart found unique ways to communicate and remain a vital member of his family and community.

“Dick was committed to living with ALS, not dying with it,” says his sister, Patty. “He faced his fate head on. He was the inspiration and motivation that led me and my husband to get involved.”

Patty began to lead a monthly support group for ALS patients at UVA, where she met Susan Carrington, the wife of ALS patient Dick Carrington. A conversation began about a multidisciplinary clinic that could bring together all of the specialties that ALS patients need. This would make a tremendous difference by eliminating the travel to different clinics in separate locations, a particular burden for ALS patients with movement issues.

In 1999, the multidisciplinary Richard R. Dart ALS Clinic opened at UVA, supported by gifts and fundraising efforts undertaken by the Dart family, the Carrington family, the St. Ours family, ALS patients and their families, and friends. Twenty years later, the Dart Clinic has become Virginia’s first Certified Treatment Center of Excellence for ALS. Today, UVA provides world-class care, and collaborates with investigators around the world to work on a cure.

“Patients who have this overwhelming disease can come to the Richard R. Dart ALS Clinic and get all the care they need in one place on a single day,” says Matt Elliott, clinic medical director. “Because of this clinic, I can offer hope and support in the most difficult times.”

The clinic team has cared for thousands of patients, while also conducting clinical research aimed at slowing or halting the effects of ALS. Recently, renowned neurologist and researcher Dr. Goran Rakocevic joined the team to further strengthen their research mission.

Patty Dart and her husband, John Houghton, have also included UVA Health in their estate plans to benefit the clinic and help it continue to provide much needed services to ALS patients.

“It is the clinic’s medical team’s compassion for and dedication to ALS patients that has made the clinic such a success," says Patty, "and has allowed Dick’s spirit to live on as a guiding light for ALS patients and their families.”