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Argentinian couple moves to US to allow their toddler to join gene therapy trial

The Lovatos relocated from Guatemala to Ohio for their son, who has the rare genetic disorder Canavan disease ....

United States , Juan Lovato , Samantha Karlin , Robert Lober , Lindsay Karlin , Navy Seal , Rare Diseases Information Center , Drug Administration , Cure Canavan Fund , Canavan Research Foundation , Ciro Lovato , Dayton Children ,

New gene therapy trial in US offers hope for children with Canavan disease

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Benny Landsman, 4, at Dayton Children’s Hospital April 8, 2021, before surgery to receive the first clinical trial of a new gene therapy for Canavan disease. (Courtesy of the Landsman family/ via Dayton Jewish Observer)
Benny Landsman, 4, is prepped for surgery at Dayton Children’s Hospital, April 8, 2021. (Courtesy of the Landsman family/ via Dayton Jewish Observer)
Benny Landsman with Paola Leone and Dr. Christopher G. Janson at Dayton Children’s Hospital, April 8, 2021. (Courtesy of the Landsman family/ via Dayton Jewish Observer)
Jordana Holovach with her late son, Jacob, who died of Canavan disease at age 19. (Courtesy of Jordana Holovach/ via Dayton Jewish Observer) ....

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Gene Therapy Trial Offers Hope for Children With Canavan

By Marshall Weiss, The Dayton Jewish Observer (reprinted with permission) | May 06, 2021
In an operating room at Dayton Children’s Hospital on April 8, 4-year-old Benny Landsman of Brooklyn received the first new clinical trial of an FDA-approved gene therapy for Canavan disease.
Neurosurgeon Dr. Robert Lober placed four catheters in holes drilled into Benny’s skull, down a track to a fluid space in the brain’s ventricles. Lober then manually injected a fluid containing 370 trillion viral genomes of the new therapy.
By his side in the operating room were the trial’s clinical leader, Dr. Christopher G. Janson, also with Dayton Children’s and Premier Health’s Clinical Neuroscience Institute, and longtime Canavan researcher Paola Leone, professor of cell biology at Rowan University in Glassboro, New Jersey, and director of Rowan’s Cell and Gene Therapy Center. ....

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Family raises millions for treatment of sons' rare and fatal neurological disorder

While the Landsman family is optimistic that the gene therapy will help their two sons, they also hope it will help families not receive same dire prognosis. ....

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Landsman Family Gets FDA Approval For Treatment for Benny and Josh

Landsman Family Gets FDA Approval For Treatment for Benny and Josh
By Jewish Link Staff | January 07, 2021
Editors note: Many of our readers have followed the journey of the Landsman family, parents Jennie and Gary and their growing family, and the family’s efforts to save two of their sons, Benny and Josh, who suffer from a rare fatal childhood brain disorder, Canavan Disease. We at The Jewish Link first reported on the family’s story in December 2017, and followed with a second article in the fall of 2019.
Jennie posted an update to her Facebook page on January 3. With her permission, we bring it to you here. ....

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