What is Kennedy's Disease (Spinal Bulbar Muscular Atrophy)
Kennedy's Disease is a rare X-linked recessive genetic progressive neuro-muscular disease which causes muscle weakness and wasting (atrophy) throughout the body. Symptoms usually start appearing between the ages of 30 and 50 with life expectancy to be at or almost normal. Generally males with this inherited gene develop symptoms, while females with this gene are carriers.
Get Support
Finding Support - you are not alone. Those who actually exhibit symptoms of Kennedy's Disease need support and understanding, as do those who love them. In our community, there are many ways to get connected with others affected by the disease and find support. The KDA offers zoom support groups, a Facebook page, a forum, conferences where individuals affected by Kennedy's disease can connect with others.
Personal Stories
Personal Stories of Individuals Living with Kennedy's Disease (SBMA). These individuals live with Kennedy's disease. They have been kind enough to share their personal stories for others so that they can understand the disease on a more personal level. We thank these individuals for their information.
KD Management & Patient Reports
Dr. Al La Spada, who discovered the gene mutation that causes Kennedy's Disease, has published a summary paper contains a wealth of information on diagnosis, disease management and other topics.
"The French National Protocol for Kennedy’s disease consensus diagnostic and management recommendations" paper. The paper contains guidelines and provides a reference care pathway for patients with Kennedy's disease. The protocol is based on currently available scientific evidence and provides a consensus statement for the care of KD patients.
The "Kennedy's Disease/SBMA Voice of the Patient Report" is based on the “Patient-Focused Drug Development (PFDD)” meeting held at the KDA 2022 conference and related patient input. Voice of the Patient reports are used by the U.S. Food and Drug Administration as an important source of information used to evaluate clinical trial results.
KD Research
The Kennedy’s Disease Association's (KDA) mission is to find a cure or treatment for Kennedy's disease by financially supporting research. Every year the KDA funds and awards research grants to researchers from around the world so they can find a treatment or cure for this disease. Clinical Trials have been conducted from these research grants.
What Else
The Kennedy’s Disease Association (KDA) has identified several external resources to help individuals and their families understand and live with this rare neurological disorder.
