Benny and Josh Landsman Trust
Donation protected
Benny and Josh seemed normal at birth, but then stopped developing skills at 6 months old. They were diagnosed with a rare genetic disease, called Canavan Disease. There is currently no treatment on the market. Their parents began the charity, "Cure Canavan Fund" and were instrumental in raising the funds to begin a clinical trial to use gene therapy to help treat Canavan Disease, the trial is scheduled to begin in the spring of 2021.
Benny and Josh cannot currently sit up on their own, roll over, walk or talk. There are many therapies and needs that are not covered by insurance, that can help enhance their quality of life, such as aquatherapy, mobility equipment, homecare, and adaptive toys. As they get older and bigger their needs will continue to grow. The boys will likely need extra help for their entire lives. The "Benny and Josh Landsman Trust" (managed by their loving Aunts, Leah Rubino and Ilana Landsman) was started to help pay for the extra costs needed to care for them.
Many people have heard about Benny and Josh from their "Save Benny and Josh" campaign to raise funds for the gene therapy treatment. We are forever grateful to all of you, who helped us reach that goal. This trust is to help them move forward with their life beyond gene therapy. To help their new lease on life be a comfortable and fulfilling one.
Benny and Josh cannot currently sit up on their own, roll over, walk or talk. There are many therapies and needs that are not covered by insurance, that can help enhance their quality of life, such as aquatherapy, mobility equipment, homecare, and adaptive toys. As they get older and bigger their needs will continue to grow. The boys will likely need extra help for their entire lives. The "Benny and Josh Landsman Trust" (managed by their loving Aunts, Leah Rubino and Ilana Landsman) was started to help pay for the extra costs needed to care for them.
Many people have heard about Benny and Josh from their "Save Benny and Josh" campaign to raise funds for the gene therapy treatment. We are forever grateful to all of you, who helped us reach that goal. This trust is to help them move forward with their life beyond gene therapy. To help their new lease on life be a comfortable and fulfilling one.
Organizer and beneficiary
Jennie Landsman
Organizer
Brooklyn, NY
Leah Rubino
Beneficiary