BDSRA: Related Links

Related Links

In order to effectively combat the devastation of the disease and to fully support research efforts to unravel the mysteries of Batten, the worlds of medical science and their families must meet and work closely together to reach understanding and common goals.

The BDSRA sees the tremendous need for a unified entity that would work toward common important goals. In an effort to continue to act as a national registry for researchers and families, we are providing the following links to other sites on the World Wide Web which provide you with additional information or updates on the current situation within the Batten community.

We appreciate your interest and welcome your suggestions for related areas to add to our list.

Batten Disease Diagnostic and Clinical Research Center - A critical ally in our battle with Batten at the University of Rochester Medical Center.

	*Related Links* In order to effectively combat the devastation of the disease and to fully support research efforts to unravel the mysteries of Batten, the worlds of medical science and their families must meet and work closely together to reach understanding and common goals. The BDSRA sees the tremendous need for a unified entity that would work toward common important goals. In an effort to continue to act as a national registry for researchers and families, we are providing the following links to other sites on the World Wide Web which provide you with additional information or updates on the current situation within the Batten community. We appreciate your interest and welcome your suggestions for related areas to add to our list. Batten Disease Diagnostic and Clinical Research Center - A critical ally in our battle with Batten at the University of Rochester Medical Center.
	www.nicksbattle.com - Nick's Battle Foundation is named for Nicholas Heuchan and dedicated to his battle with Juvenile Batten Disease www.jax.org - The Jackson Laboratory has played a critical role in cancer and neuronal research since 1929. Added 09/16/2006 www.caninegeneticdiseases.net/CL_site/mainCL.htm - Canine Neuronal Ceroid Lipofuscinosis, College of Veterinary Medicine, University of Missouri Added 06/22/2006 www.nsvf.org - The Norwegian Batten family association (Norsk Spielmeyer-Vogt Forening) Added 02/03/2005 www.ceroidolipofuscinosi.it- The Website for the Italian organization of Batten parents. Added 12/6/2004 www.crossfamily.truepath.com- A family directly affected by Batten disease reflects on faith during the storm. Added 8/8/2003 Nathan's Battle Foundation- Founded to raise money to find a cure for Late Infantile Batten disease and specifically to fund promising gene transfer research at Cornell University that could save the lives of Nathan and P.J. Mito as well as others with this disease. Added 7/30/2003 NZORD - The New Zealand Organisation for Rare Disorders, provides New Zealand's central starting point for information about rare diseases. Committed to building networks and partnerships between patients/families, researchers, clinicians and policy agencies, to speed knowledge gain and treatments for rare diseases. Added 04/09/2003 Melissa Froio Foundation- A charitable foundation whose main purpose is to raise money to help find a cure for this disease. These donations in turn will be sent to both the BDSRA and to the St. John of God school. Added 10/14/2002 GeneReviews - an online publication of the University of Washington, is funded by the National Institutes of Health (NIH) and is free to all users. GeneReviews is expert-authored and peer-reviewed; it is intended to provide healthcare professionals with information about the use of genetic testing in patient diagnosis, management, and genetic counseling. Corrected 05/02/2002 Children's Medical Charity - a charity dedicated to raising funds for children with life threatening medical problems and their families. We are currently helping our first child whose name is Cole Gardner. He has Batten Disease. Added 01/09/2002 Children Living with Inherited Metabolic Diseases - A national umbrella organisation of the United Kingdom working on behalf of children, young people and families affected by metabolic diseases. Added 5/16/2001 JNCL Research Fund - The JNCL Research Fund is committed to seeking out and supporting science of excellence, relevant to the discovery of treatments for the most common degenerative brain disease of children, JNCL (commonly known as Batten Disease). The New Zealand Lysosomal Storage Disease Support Group Organized to improve contacts, information sharing and support among affected people and their families, within New Zealand and internationally; to advocate for accelerated research into the causes and treatment of Lysosomal Storage Diseases, and for improvements to the treatment and care of affected people. Added 1/25/2000 HealthlinkUSA - free links to 1,000's of health sites, 100's of health topics, featuring treatment, cures, diagnosis, prevention, risk factors, support groups, email lists, personal stories, etc. Added 9/15/1999 The DNA Learning Center Added 9/15/1999 The Batten Support and Research Trust It is our mission to ensure that public awareness is achieved by whatever means. Through awareness come knowledge and through knowledge comes hope. Research is based on demand and demand is created by awareness. Updated 01/09/02 The Batten Disease Family Association (BDFA) United Kingdom was formed in 1998 by a small group of parents of children with Batten disease in the United Kingdom. The association exists as a supportive and informative network for parents and carers of children and adults with Batten disease. Added 7/12/99 Exceptional Parent Magazine EP’s on-line resource. Continuing 31 award-winning years of providing information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them. Added 6/13/1999 University of South Dakota Center for Disabilities The Resource Guide for People with Disabilites under Individual Disorders and Rare Disorders. updated 2/19/2003 Journey of Hearts A Healing Place in Cyber Space with over 330 pages of poems, inspirational quotes, stories, and over 250 medical and other links. The site provides resources for those who are dealing with a loss, in whatever form it may take. added 6/3/1998 The Natey Foundation This site is dedicated and designed in honor of Natey and every other victim of Batten Disease. added 2/17/1998 Med Help International A non-profit organization is pleased to announce the opening of our FREE NEUROLOGY FORUM FOR PATIENTS, sponsored by The Cleveland Clinic Foundation. This forum allows patients from around the world, to post their questions regarding neurology issues, which will be answered by leading neurologists from the Cleveland Clinic within 5-7 days. This forum is ALL FREE OF CHARGE. added 3/29/1997 Family Village A global community that integrates information, resources, and communication opportunities on the Internet for persons with mental retardation and other disabilities, their families, and those that provide them services and supports. added 10/09/1996 National Tay-Sachs and Allied Diseases Association (NTSAD) The National Tay-Sachs & Allied Diseases Association (NTSAD) is dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related diseases, and to provide information and support services to individuals and families affected by these diseases, as well as the public at large. added 9/30/1996 Epilepsy Foundation of Victoria, Australia added 7/28/1996 NORD: The National Organization for Rare Disorders Since 1983, working toward the prevention, treatment, and cure of rare "orphan" diseases. The Epilepsy Home Page Epilepsy explained. updated 2/16/2003 The Dana Alliance for Brain Initiatives At this site you will find information about the programs, activities, and publications of the Dana Foundation and the Dana Alliance, as well the latest news about the brain. National Institute of Neurological Disorders and Stroke Science for the Brain. The nation's leading supporter of biomedical research on disorders of the brain and nervous system. The National Institute of Health Center for Human Genome Studies This center was established as part of the Los Alamos Laboratories in 1988. It main goals are the development of high resolution maps of chromosome 16 and 5. Parents Helping Parents A family resource center serving parents and children with special needs. PACER Center Parent Advocacy Coalition for Educational Rights Glaxo Neurological Center Supporting people with neurological conditions and their families.
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	BDSRA Home Page	Last Updated/Reviewed 7/17/08