KENNEDY'S DISEASE ASSOCIATION
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Mission Statement
The Kennedy's Disease Association (KDA) is a 501(c)(3) non-profit organization. Our primary mission is to raise funds for research into Kennedy's Disease (Spinal and Bulbar Muscular Atrophy - SBMA) and to support the search for a cure. We also strive to improve awareness of the disease among the medical community and general public. We support KD patients and their families through education with our website and quarterly newsletters and through annual conferences where patients and their families can meet scientistis and clinicians to learn about current research and therapy development.
About This Cause
Kennedy's Disease is a rare, late-onset neuromuscular disease affecting primarily males and sometimes misdiagnosed as ALS. The gene mutation causing the disease is located on the X chromosome. Females are carriers of this mutation and have a 50-50 chance of passing the disease to their offspring. They may also experience symptoms. KD men will pass the mutation to their daughters but not to their sons. Men with Kennedy's Disease typically begin to experience a decline in muscle strength beginning in their 40s or 50s, and will lose 2% of their muscle functions each year after the onset of symptoms. Mobility becomes a challenge, and many KD men eventually need assistive devices to move around. Speech and swallowing are also affected, and some men must use feeding tubes when they are no longer able to chew and swallow normal food. The prevalence of Kennedy's Disease is a topic of great interest in the scientific community. Until recently, the gene mutation causing the disease was thought to affect 1:40,000 men. New research from UK scientists points to a much higher prevalence, as many as 1:7,000. Studies are underway to determine the reasons for undercounting the number of potential patients, with the leading theories focused on lack of or mis-diagnosis or the lack of significant symptoms among people carrying the gene mutation. While the gene mutation causing Kennedy's Disease was discovered in 1991, there are as yet no effective therapies, nor is there a cure. Research into the mechanisms causing the disease is ongoing in many countries, reflecting the global nature of Kennedy's Disease. A clinical trial began in 2023 for one potential therapy and a second trial for a different therapy is planned to begin in 2024. KDA is focused on maintaining awareness of ongoing research and clinical trials and keeping our members informed of scientific developments. Through donations primarily from patients and their families, we provide grants and fellowships to scientists in multiple countries in the quest for effective therapies and, eventually, a cure for this devastating disease. THE KDA STORY The concept for the Kennedy's Disease Association (KDA) began in 1999 after Susanne and Terry Waite and Patrick Griffin attended the Families of Spinal Muscular Atrophy Conference. At the time, there was no organization supporting Kennedy's Disease. Upon returning home the Waites talked with Mr. Griffin and agreed to email everyone on their mailing lists asking for their support in starting up an association. Audrey Lewis, one of the FSMA founders, supported the start-up by mentoring the Waites through the beginning stages of the startup. The KDA was incorporated in August 2000 and received their 501(c)3 status that same year. Please help us find a cure!