THE DISEASES

The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease.

TAY-SACHS

Tay-Sachs disease is a progressive neurological genetic disorder caused by the lack of the vital enzyme Hexosaminidase A.

SANDHOFF

Sandhoff disease is a progressive neurological genetic disorder caused by the lack of the vital enzymes Hexosaminidase A and B.

COMMUNITY

The Cure & Action for Tay-Sachs (CATS) Foundation community has grown substantially over the years in both the UK and the rest of the world.

ABOUT US

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.

OUR WORK

At The CATS Foundation we provide support, raise awareness and fund the research for Tay-Sachs and Sandhoff disease.

    SUPPORT
    We provide a support for families affected by Tay-Sachs and Sandhoff disease through a dedicated network of families who share their experiences. The charity also provides the following services:
    Equipment not provided by the NHS
    Respite trips to Bluebells
    Family conferences through the ETSCC
    Funeral funding
    RESEARCH
    The CATS Foundation is committed to finding a viable treatment option for children affected by Tay-Sachs and Sandhoff disease. We have helped raise multi million pound funding for public and private sources which have helped us move the research in this area forward.
    Support a groundbreaking gene therapy project
    Fundraise for research projects
    Investigate other research projects through the ETSCC
    Maintain the only patient registry for Tay-Sachs and Sandhoff
    PROFILE
    The CATS Foundation is committed to raising awareness of Tay-Sachs and Sandhoff disease to the wider public. This helps us reach more families affected by these awful diseases and has enabled us to build a valuable community across Europe.
    We hold fundraising events throughout the UK
    We give talks about Tay-Sachs and Sandhoff
    We have raised the profile of Tay-Sachs and Sandhoff
    We have attracted many corporate supporters

    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.

    APP STORE

    The eAcademy app is available on the Apple App Store.

    GOOGLE PLAY

    The eAcademy app is available on Google Play.

    WINDOWS STORE

    The eAcademy app is available on the Windows Store

    PATIENT REGISTRY

    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.