|
St. Petersburg, FL 33713 Phone: 727-894-4318 Kupchurch@prodigy.net
The Florida Chapter tries to reach the families within the state and offer support throughout the course of this devastating disease. We were started in 1992 as a Chapter of the National Organization, Batten Disease Support and Research Association. Batten Disease is a rare disease that is a recessive inherited disease, meaning both parents must carry the same gene. Batten disease' onset is anytime from soon after birth into the teens and early adulthood. It causes dementia, many forms of seizures, loss of vision, loss of the ability to walk talk, eat and care for themselves, and always leads to death of the children. We offer:
Our Friends in the Community are: Premdor Corp., Luria & Sons, Blumberg Communications Inc., Radisson Hotel Orlando Airport, Riverside Foundation, Eckerd Drugs, Home Depot Inc.,Home Depot Store #257, P. Buckley Moss, Hospice of FLorida, Pinellas Co. School Board employees, We are a 501(c)(3)orgainzation and all donations are tax deductible. FEN:59-3152894 CFC#2992 Find out more about our organization at http://www.bdsra.org Organizations mission is: To be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease. |
