Daniel Lewi

Dan’s eldest daughter Amelie was diagnosed with Tay-Sachs in 2011 at 15 months of age and upon finding that there was no dedicated charity providing support for families affected by this disease he set set-up the Cure & Action for Tay-Sachs (CATS) Foundation with his wife Patricia. Since the charity was launched, Dan has been able to grow The CATS Foundation so that it now offers a variety of services to its family members, including equipment, respite trips and funeral funding grants. The charity was also recently nominated as the patient organisation for a clinical trial into Tay-Sachs using gene therapy and Dan is actively involved in this ground breaking work. Dan is also the Founder and Chairman of the European Tay-Sachs and Sandhoff Charity Consortium. The ETSCC was created to enable European charities to come together in the fight against Tay-Sachs and Sandhoff. Members  are all recognised charities in their country of origin. The three aims of the ETSCC are to raise awareness of Tay-Sachs and Sandhoff, support the research for a potential treatment and provide a united European voice. The members of the ETSCC meet once a year to discuss the progress of the research into Tay-Sachs and Sandhoff and the consortiums strategy.

back to top