CATS Foundation home page
THE DISEASES
The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease.
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.
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.
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.
FUNDED BY
The The Cure & Action for Tay-Sachs (CATS) Foundation is fortunate to have been funded by various organisations since it was founded in 2011. These include:
HM Government & NLC Fund
Funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, has helped us continue our vital work during the COVID-19 crisis in 2020. Thanks to the Government for making this possible!
CAF
The CATS Foundation was fortunate to receive a grant from the Charities Aid Foundation as part of their COVID-19 emergency funding.
National Lottery Community Fund
The CATS Foundation received support from the National Lottery Community Fund.
MEMBER OF
The The Cure & Action for Tay-Sachs (CATS) Foundation is a member of various organisations that help us achieve our goals. These include:
UK LSD Collaborative
The CATS Foundation has been a member of the UK LSD Collaborative since 2015. The collaborative brings together all the LSD charities in the UK.
ETSCC
The CATS Foundation is a founding member of the European Tay-Sachs and Sandhoff Charity Consortium (ETSCC).
Eurordis
The CATS Foundation is an active member of Eurordis.
REGISTERED WITH
The The Cure & Action for Tay-Sachs (CATS) Foundation is registered with various organisations that regulate good charity practice. These include:
Fundraising Regulator
The CATS Foundation is registered with the Fundraising Regulator.
Charity Excellence Framework
The CATS Foundation is registered with the Charity Excellence Framework.
NCVO
The CATS Foundation is registered with the NCVO.