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Media Coverage PDF Print E-mail

Canavan Research in the News

Beginning with the first gene therapy trial in New Zealand in March 1996, the Canavan Research Foundation has garnered headlines across the nation and the world. Below is a partial list of articles (with links, where available) that have appeared in newspapers, magazines, newsletters and online. Please contact us via e-mail at This e-mail address is being protected from spambots. You need JavaScript enabled to view it for additional articles, scientific abstracts and television coverage.

National/International Publications

"Sending genes to save a child: Pa. parents gamble on an unproven therapy to give their infant daughter a normal life"
By Rory Sweeney
The Philadelphia Inquirer
September 17, 2005


"Ten Years of Progress: The Forward looks back at the strides that have been made in the fight against Jewish genetic diseases"
By Miriam Colton
The Forward
August 20, 2004
"Girl improving three months after surgery"
Associated Press
USA Today
July 30, 2003

"Girl's family pleased with experimental treatment"
Associated Press
USA Today
June 19, 2003

"Gene Therapy May Be Key to Unlock Canavan's Disease"
By Cherie Bank
NBC News
April 10, 2003
"Gene Therapy Targets Canavan Disease: Clinical trial is first to use recombinant viruses in the brain to prevent neurodegeneration"
By Douglas Steinberg
The Scientist
September 17, 2001

"Gene Therapy Offers a Family Hope"
By Faye Flam
The Philadelphia Inquirer
July 6, 2001

"Discovery of Canavan Rat Thrills Researchers"
By Caryn Tamber
The Forward
August 18, 2000

"Caution Over Gene Therapy Puts Hopes on Hold"
By Rick Weiss
The Washington Post
March 7, 2000
"Canavan Children Are Holding Their Own, Parents Say: Gene Therapy Increases Their Alertness, Appears to Stop Progress of Deadly Disease"
By Elizabeth Schainbaum
The Forward
August 20, 1999

"Doctors Urge Screening for Disorder"
By Steven Greenhouse
New York Times Magazine
April 27, 1999

"Fighting for Jacob"
By Michael Winerip
New York Times Magazine
December 6, 1998

"Technique for Rare Disorder Offers Hope for Others Who Lose Brain Functions Because of Various Diseases"
By Thomas H. Maugh II
The Los Angeles Times
July 2, 1998

"Pioneering Brave New World of Gene Therapy"
The Forward
August 23, 1996

"Coping; A Postcard from Morgan's Twilight World"
By Robert Lipsyte
New York Times Magazine
April 14, 1996

"Tailoring Genes to Bring Hope"
By Simon Robinson
TIME Magazine
March 25, 1996

"Genes Injected into Toddlers' Brains to Slow Disease"
Agence France-Presse
South China Morning Post
March 7, 1996

"Hospital to pioneer gene therapy for fatal brain disease"
By Fiona Barber
The Auckland Herald
March 1996

"Hope in a New Treatment for a Fatal Genetic Flaw"
By Matthew Hay Brown
The New York Times
October 29, 1995



Regional Publications

"Buffalo Grove women to donate contest win of $50,000 to charity"
By Ruth Gesmer Silverman
The Daily Herald
June 2, 2006

"Harrison child fighting rare brain disease"
By Liz Sadler
The Journal News
April 24, 2006

"Battling for a Cure"
By Julian Kesner
New York Daily News
April 13, 2005

"Leone's Love Affair"
By Maryann B. Brinley
UMDNJ Magazine
Spring 2005

"Special Delivery, Destination: The Brain"
By Anton Zuiker
Endeavors Magazine, UNC Chapel Hill School of Medicine
2005

"Stem cell policy sparks hope, fury: Parents see progress in daughter's fight with Canavan disease"
By Robert Miller
The News-Times
August 10, 2004



"Scientists, politicians seek to bolster cases on future research"
By Robert Miller
The News-Times
August 10, 2004

"Improving a life: Rare disorder responds to gene therapy"
By Czerne M. Reid
Milwaukee Journal Sentinel
July 25, 2004
"Saving Lana: W. Columbia toddler recovering one year after surgery"
By Scott Hawkins
WIStv.com
June 28, 2004

"It's in the Genes: Panel to discuss genetic testing, dilemmas"
By Robert Miller
The News-Times
March 14, 2003

"Exploring 'uncharted territory': Connecticut family on cutting edge of gene therapy"
By Mara Dresner
The Jewish Ledger
March 7, 2003

"A Survivor’s Story"
By Jill Kaiser Dion
Better Health Magazine, Hospital of St. Raphael
March/April 2002

"Genetic Breakthrough: Girl with rare, incurable disease improving with new treatment"
By Robert Miller
The News-Times
February 24, 2002

"New Genes Provide Hope to Palatine Boy "
By Ruth Gesmer Silverman
Daily Herald
July 5, 2001

"Gene therapy gives girl strength to fight disease"
By Robert Miller
The News-Times
July 3, 2001

"Promising gene therapy for brain illness to begin"
By Kelly Lecker
Toledo Blade
June 5, 2001

"Hope for always-fatal kids' illness: Gene therapy is a major factor in race with rare Canavan disease"
By Robert Miller
The News-Times

"Canavan disease sufferer waiting for gene therapy"
By Robert Miller
The News-Times
June 3, 2001

"Genome exhibit teaches of then, now, someday"
By Robert Miller
The News-Times
June 3, 2001

"Rocco's Fundraiser Kicks Off Summer"
The New Milford Times
June 2001

"Fighting a rare disease"
By Debi Pittman Wilkey
The Town Journal
May 25, 2001

"'48 Hours', museum to feature local girl with rare disease"
By Robert Miller
The News-Times
May 1, 2001

"FDA approval of gene transplant gives new hope to Canavan sufferer"
By Ruth Gesmer Silverman
JTA - Global Jewish News
April 24, 2001

"Parents of victims plead for a concerted effort against a rare disease"
By Teresa M. McAleavy
North Jersey Herald News
April 16, 2001

"FDA Approves Experimental Gene Therapy"
Local 10 News (Florida)
April 10, 2001

"Families Coping"
By Cindy Sher
Chicago Jewish Community Online
April 3, 2001

"A family clings to hope: Parent pleads for cure for Brianna's 'orphan' illness"
By Kelly Lecker
Toledo Blade
March 11, 2001

"In Initial Gene Therapy Trial, Jefferson Scientists Report Successful Gene Transfer in Canavan Disease"
Thomas Jefferson University Hospital
July 31, 2000

"Karlin Family Finds Joy in Four Daughters: Lindsay Makes the Difference to Others with Canavan Disease"
By Denise Kapner
The Citizen News
September 29, 1999

"Gene therapy 'miracle' helps New Fairfield tot"
By Robert Miller
The News-Times
May 11, 1997

"Yale Researchers Pioneer Neurological Gene Therapy"
By Shalini Mimani
The Yale Herald
March 29, 1996

"Hope attends trial treatment for Canavan's"
By Robert Miller
The News-Times
March 24, 1996

"Karlins to Go to New Zealand to Seek Daughter's Cure"
By Lisa Toussaint
The Citizen News
November 1995

"Baby's life hangs on experimental surgery"
By Robert Miller
The News-Times
October 14, 1995


Online Publications

"Hope on Horizon for South Carolina Toddler to Undergo Brain Transfer Surgery; Youngest Patient Ever to Receive Canavan Disease Therapy"
Kandaker Partners: Independent Research and Advisory
April 23, 2003
"Jefferson researchers use gene therapy for rare, inherited brain disorder"
Science Blog.com
July 2001
"Girl's Parents Plead for Gene Therapy to Resume"
By Miriam Colton
WebMD.com
September 27, 2000
"Advisors Raise No Stop Sign to Gene Therapy"
By Jeff Levine
WebMD.com
March 10, 2000
"Government Panel Considers Future of Gene Therapy Research"
By Dave Cureton
Cancerpage.com
March 9, 2000
"Jefferson Neurosurgeons Use Gene Therapy to Treat Rare, Inherited Brain Disease"
Jeff News Online, Thomas Jefferson University
May 1998