The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease.
The CATS Foundation was established in June 2011 by Daniel and Patricia Lewi. Their daughter Amelie was diagnosed with Tay-Sachs at fifteen months of age in March 2011 and at the time there was no UK based charity dedicated to providing support for families affected by Tay-Sachs or Sandhoff disease. The CATS Foundation’s main focus is supporting families affected by Tay-Sachs and Sandhoff whilst also raising awareness of the diseases.
At The CATS Foundation we provide support, raise awareness and fund the research for Tay-Sachs and Sandhoff disease.
EACADEMY APP FOR TAY-SACHS AND SANDHOFF
In 2014 The Cure & Action for Tay-Sachs (CATS) Foundation was a winner of the Genzyme Patient Advocacy Leadership (PAL) Awards which has enabled the charity to develop and build the eAcademy for Tay-Sachs and Sandhoff Disease app. The app has been designed for parents and caregivers of individuals with Tay-Sachs or Sandhoff disease and includes information on symptom management, practical advice for a carer and information on the diseases. Each section contains interviews with families who have been a carer for a child affected by Tay-Sachs or Sandhoff disease.
The purpose of the Tay-Sachs and Sandhoff Disease Registry is to facilitate translational and epidemiological research into Tay-Sachs and Sandhoff disease by setting up and maintaining comprehensive clinical databases in partnership with disease-specific research groups. It will facilitate the identification of well-characterised cohorts of patients who will be invited to participate in clinical trials, development of biomarkers, phenotype-genotype correlations, or outcome studies.