Friday, December 06, 2019

Big brother Mikey with Benny, Josh and newest brother Evan, now 5 months old, who is a carrier but does not have Canavan disease.

In December 2017, The Jewish Link wrote about the Landsman family—parents Jennie and Gary, older brother Mikey, and younger brothers Benny and Josh. When Benny was 6 months old his developmental progress stalled, and after several months of intervention and therapy the family sought the advice of a neurologist, who ordered a full battery of tests. At 13 months, Benny was diagnosed with the potentially fatal Canavan disease, an autosomal recessive degenerative disorder that causes progressive damage to nerve cells in the brain, and is one of the most common degenerative cerebral diseases of infancy, according to Wikipedia. It is a disease that affects many Ashkenazi Jews. At that time, Josh was only 2 weeks old, and testing revealed that he, too, had this disease.

The family, along with Gary’s parents, Rise and Dan Landsman of Teaneck, began researching and fundraising to promote promising gene therapy trials and off-market drug usage. They raised over a half million dollars in the first few weeks, and as of this writing, their GoFundMe page has raised $1,463,930. However, in order for the trials to continue through the FDA’s testing process, they, and other families hoping to save their children, need more. The latest figures show that $4 million is needed for the research and testing to continue. Once approved, the FDA has stated that it will allow up to 10 children to be treated. That would be 10 lives saved!

The family is seeking to raise $1 million by the end of October, and an additional $1.5 million by the end of December, to help make this treatment a reality. 

To donate, or for more information, please visit https://www.gofundme.com/f/savebennyandjosh

 

Join Our List
and receive information on community events, announcements, exclusive sales and our issue emails.