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Batten Disease and Research Association Charity Profile
BDSRA is an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease.
In an effort to bring those common goals to fruition, the Batten Disease Support and Research Association - (BDSRA) was formed in July, 1986, by Gary and Judith Grant of Spanaway, Washington, who are parents of three Batten victims. Seeing the tremendous need for a unified entity that would work toward important goals and recognizing, as well, the need for support among victims and their families, the founders designed the association to:
-maximize the opportunities of victims of Batten to lead as normal lives as possible.
-provide a parent communication network, information and emotional support to families of persons with Batten Disease.
-educate lay persons and professionals about the special needs of Batten Disease victims and their families.
-act as a national registry for NCL researchers throughout the world.
Batten Disease and Research Association Volunteer Information
We have volunteer opportunities available. Please visit our website for more information.
Batten Disease and Research Association Donation Information
Donations to the Batten Disease Support and Research Association are tax deductible, subject to applicable personal restrictions.
Batten Disease and Research Association
In The News
Davidson man will go loopy for a good cause
647 days ago From Charlotte Observer
CHARLOTTE, NORTH CAROLINA - Jeff McGonnell said he'll even wear a dress while running next weekend in exchange for a donation to the Batten Disease Support and Research Foundation. JEFF WILLHELM - email@example.com Jeff McGonnell of Davidson takes practice lap ...