‘Great Road Trip’ Visits to Raise Awareness of Kennedy’s Disease

Shown are the road trip team alongside NIH scientists, including Dr. Kenneth Fischbeck (l) and many from his laboratory in the hereditary neurological disease section of the NINDS Neurogenetics Branch.

Photo:  DARREN ARTHUR, KENNEDY’S DISEASE UK

The Great Road Trip—a transcontinental journey from Los Angeles, Calif., to Rome, Italy, to raise awareness for Kennedy’s disease—stopped by the Clinical Center May 16 to visit with NIH researchers and clinicians who study and treat the disorder.

Kennedy’s disease, also known as spinal bulbar muscular atrophy (SBMA), is a rare inherited neuromuscular disorder that causes muscle weakness and atrophy. Currently, there is no cure or specific treatment. Therapy is symptomatic and supportive.

To bring more attention to SBMA and the need for increased research, the road trip team—which consists of members of the Kennedy’s Disease Association—is driving a refurbished Citroen 2CV across 2 continents, traveling 6,600 miles from April to July 2022, and stopping along the way for media and fundraising events.

On hand to greet the road trip team were several NIH scientists, including many from Dr. Kenneth Fischbeck’s laboratory in the hereditary neurological disease section of the NINDS Neurogenetics Branch, who are working to develop effective treatments for the disease. Kennedy’s disease is caused by a mutation in the androgen receptor gene on the X chromosome.—Shannon E. Garnett