12/14/2021
It is with excruciating sadness and a heavy heart that we inform you that Lindsay Karlin, has passed away after a long battle against Canavan Disease.
Lindsay inspired everyone she knew, including Paola Leone, who decided to research and take on the fight against Canavan Disease after meeting Lindsay in 1994, when there was no research at all being done on the disease.
Lindsay was the first person in the world to receive gene therapy for a brain disease in 1996, and over a dozen children since then have received gene therapy thanks to Lindsay's bravery and Paola and Matt During's research, including the Landsman brothers Jennie Rosenblum Landsman.
Lindsay was featured in the Museum of Natural History for her contribution to understanding the human genome, and has been featured in the news, from the South China Morning Post to 60 Minutes New Zealand to Forbes Magazine, National Geographic, the NYTimes, and the Today Show.
Originally predicted to die by age 5, Lindsay fought until 27 years old. She was a fighter.
For a little girl who couldn't walk, talk, or hold her head up, she leaves an unbelievable legacy, and made everyone who met her better and more compassionate people.
For those who wish to pay their respects, the funeral will be held tomorrow, Wednesday, December 15, at Congregation Shir Shalom, 46 Peaceable St., Ridgefield, CT 06877, at 11 am.
The burial will be held at 3pm at Mt. Ararat Cemetery, 1165 NY-109, Lindenhurst, NY 11757.
All who attend must be vaccinated and wear masks.
Donations can be made in her honor to www.canavan.org or to this page.
Goodbye Lindsay, you were so loved. The world is a better place because of you.
