The Kennedy's Disease Association (KDA) is a non-profit corporation organized in support of those affected by Kennedy's Disease: patients, family members, health care practitioners, and the general public. Its aim to to provide information and foster communication via the the Internet using its Web site, located at the KDA Web site.
KDA maintains an opt-in email contact list composed of associates located in the United States, Canada, France, Germany, Holland, Mexico, Argentina, West Indies, and Belgium. Many have agreed to share their names with other associates, and have established contact and begun to network among themselves.KDA holds bi-weekly chat sessions via the Internet as a means for those living with KD to discuss issues and share ideas.
KDA was recognized by the United States Internal Revenue Service as a non-profit, tax-exempt corporation, in accordance with Internal Revenue Code paragraph 501 (c) (3). In simple language, that means that contributions to the KDA are tax-deductible. This allows KDA to organize fund raising efforts to support those with SBMA, fund research, and educate health care providers and the public. KDA will soon begin to build a fund from which to support research towards developing a treatment for KD and eventually discovering a cure. The Kennedy's Disease Association is a 100% volunteer organization
The Kennedy's Disease Association (KDA), physically located in Simi Valley, California, has an international scope through its Web site. The KDA corporate officers include Susanne Waite, Executive Director and President; Terry Waite, Vice President and Treasurer; and Patrick T. Griffin, Secretary. Terry and Patrick have been both diagnosed with KD.
The mission of the Kennedy's Disease Association is to conquer Kennedy's Disease by supporting research in an effort to develop viable treatment for KD and eventually discovering a cure for this now incurable disease.
The purpose of the KDA is to gather and publish information about KD, including its symptoms, diagnosis, management, and current state of research. This will be accomplished via the Internet through the establishment and maintenance of a Web site, through chat sessions, surveys, and direct email. The Web site will provide basic information about the disease, supply links to other relevant sites, and serve as a focal point for communication between the supported population. The Internet approach has been chosen because of the KD's relative rarity: the low patient density would not support an in-person support group. In addition, fundraising will be conducted by KDA to support this information effort, and the development of a fund to support KD researchers, with a goal to spend 70% of every donated dollar on research.
The primary goal of KDA is to take whatever action is necessary to help conquer Kennedy's Disease.
A secondary goal of KDA is to bring together, via the Internet, those who are affected by this disease to share their challenges, their solutions, and engender hope within them. This will allow the KDA to develop a database of patient experiences to provide information to practitioners, researchers, and patients to better enable them to manage this disease.
A tertiary goal of KDA is provide information to the general public to promote awareness amd understanding of KD, and the need for more research. This public information effort will be tied to the fund raising campaign to enable achievement of the KDA mission.
KDA is a 100% volunteer organization. It needs your help, and that of your friends and family. Please visit its Web site, of contact it by mail, telephone, or email.
The Kennedy's Disease Association may be reached at:
Telephone: (805) 577-9591
Email: tswaite@pacbell.net
Or visit the KDA Web site