Research and Clinical News

The 2008 Request For Proposals are posted - There is a PDF version and a Microsoft Word version. BDSRA is committed to reviewing and helping fund advancements in the treatment and prevention of Batten disease.

Drug Trial for Juvenile Batten Disease
Finally, after 180 years, we may be able to do something about Juvenile Batten disease. Please, read on . . .

Rochester Receives $1.2 Million to Battle Rare Childhood Disease:   Exciting details ! ! !

The 2007 Request for Proposals are Posted - There is a PDF version and a Microsoft Word version. BDSRA looks forward to reviewing and helping fund new and exciting advancements in the treatment and prevention of Batten disease.

The Ethics of Medical Research on Children : NPR's "All Things Considered" , October 31, 2006. Audio and transcript.

National Public Radio (NPR) News Story on Batten Disease - Hear the audio version w/interviews or read the Health & Science article which aired on Tuesday, June 20, 2006. Related link: Canine NCL

 Stem Cell Inc. accepting applicants for 1st clinical trials: June 12th, 2006 - Clinical trial subject information with cover letter from BDSRA.

 Stem Cell Inc. receives approval for clinical trials on Batten Patients-March 9, 2006: StemCells, Inc. today announced that it has received approval from the Institutional Review Board (IRB) of the Oregon Health & Science University (OHSU) to initiate a Phase I clinical trial of the Company's proprietary human neural stem cell product—HuCNS-SC ™— Details...

2006 Request for Proposals- 29 March 2006

 Stem Cell Inc. receives FDA approval - Direct clinical trials are becoming more possible. Details...
Scientists identify an amino acid transport defect - 25 January 2006: For the first time, scientists studying a fatal childhood neurodegenerative disorder, juvenile Batten disease, have identified a defect in transport of the amino acid arginine in cells from affected children. The finding helps researchers understand how the disease develops and may lead to new ways of treating it.
2005 Request for Proposals - 28 February 2005
Canine Neuronal Ceroid Lipofuscinosis - University of Missouri Web site - 3 February 2005
1st. International Education Conference on Batten Disease (JNCL)    Early May 2006 in Sweden, sponsored by Scandanavian countries - 5 January 2005
2004 BDSRA Conference Research Awards 29 August 2004
2004 Request for Proposals - Canada Only 13 July 2004
2004 Request for Proposals 1 March 2004
Understanding How the Cellular "Garbage Disposal" Grinds to a Halt to Cause Rare, Fatal Childhood Disease, News release from University of Rochester - 28 January 2004
The BDSRA awards research grants at 2003 conference
Stem Cell Research Targets Diseases of the Central Nervous System, May 23 news release from University of Missouri at Coumbia - 10 June 2003
  Summary of Recent Research News Compiled by David Pearce, PhD - 28 May 2003
StemCells, Inc. presents preclinical proof of concept for treatment of Batten Disease, a fatal neurological disorder." - 06 May 2003
Revised Request for Proposals - 16 April 2003
  HHS Names 13 (includes Kim Zellmer, mother of child with Batten) to Secretary's Advisory Committee on Genetics, Health and Society 2 February 2003
  BDSRA Standing RFP 04 September 2002
  BDSRA Awards Research Grants for 2002 13 August 2002
 Study Finds Autoimmune Link In JNCL 22 May 2002 also see www.ninds.nih.gov
 Request for Proposals 04 March 2002
  Cloning of CLN6 Gene Announced 9 January 2002
  BDSRA Family Conference 2002 18 December 2001
  CLN6 Gene Identified  18 December 2001
  Batten Testing: List of Diagnostic Centers 11 September 2001
  BDSRA Adds Nurse to Staff 14 August 2001
  BDSRA Awards 13 Research Grants 08 August 2001
  Drug shows promise for Batten treatment NICHD release 30 March 2001
Request for Proposals 01 March 2001
  BDSRA Research Grants Awarded  23 August 2000
  Request for Proposals  25 May 2000
  BDSRA Research Grants Awarded  9 April 2000
  Request for Proposals 2 Jan 2000
  Summary Report, Batten Disease Workshop, April 1-2, 1999, Neuroscience Center, Bethesda, MD  (.rtf format) 16 Sep 1999
  Batten Disease Family Conference (UK)  16 Sep 1999
  BDSRA Research Grants Awarded  15 Sep 1999
  Request for Proposals 7 May 1999
  BDSRA Research Grant Awarded  7 May 1999
  The Neuronal Ceroid Lipofuscinoses (Batten Disease) (New Book) 26 April 1999
  Batten Disease Featured in the News in Australia 26 April 1999
  1999 International Conference Information 22 February 1999
  Request for Proposals 20 January 1999
  Prenatal Diagnosis of Classical Late-infantile 15 December 1998
  Fast and Reliable DNA-based Test 10 November 1998
  BDSRA Awards $ 119,650.00 for Research 30 August 1998
  Infantile DNA Testing 13 July 1998
  FUNDS INCREASED and DATE EXTENDED - Request for Proposals - research funding available 28 June 1998
  Gene for Finnish Variant Late Infantile Identified 28 June 1998
  Kufs Research Grant awarded! 12 Mar 1998
  Carrier Testing for Infantile Coming soon 26 Oct 97
  1998 International Conference, Richmond, VA, 29 Jul - 2 Aug 25 Sep 1997 
  7th International Congress, Dallas, Texas, 13-16 June 1998 25 Sep1997 
  Late Infantile Gene Identified 25 Sep 1997 
  Research Breakthrough Announced for Late Infantile NCL 21 March 1997