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Cure and Action for Tay-Sachs (CATS) Foundation
Cure and Action for Tay-Sachs (CATS) Foundation
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Our work & testimonials

The support we provide our families
Here to help

We're always here to help families

At The CATS Foundation we are dedicated to supporting the Tay-Sachs and Sandhoff community. Everyone at the charity has first-hand experience of navigating the challenges that our families face.
Our goal has always been simple - we want our families to always feel that they have someone they can turn to for support, information and advice.
Patricia Durao
CO-Founder of CATS

Support

WITH RELEVANT INFORMATION

Conferences

BRINGING FAMILIES TOGETHER

Respite

ACCESS TO SPECIALIST CENTRES

Tools

DEVELOPED FOR THE COMMUNITY
Our feedback

What our families say​

Supporting families is one of our key objectives at the charity - here is what they say about us!
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The CATS Foundation made such a difficult time so much easier for our family - we'd be lost without them and the support they gave us.
Nikki
Nikki Mum to Ruby
When our son was diagnosed we got so much help from CATS. Without them, I honestly don't know what we would have done without their support.
Emma
Emma Mum to Stanley
Those first few months were so difficult, without the guidance provided by CATS to help us prepare and come to terms with a diagnosis it would have been so tough.
Jodie
Jodie Mum to John
The support we provide

Our Family Support Officers

The role of Family Support Officer is wide and varied. Emma and I work throughout the year on different projects, some are regular support activities that we deliver each year while others are new initiatives. Regardless they have one aim in mind, to help support our families to the best of our abilities. We offer advice on the diseases and how to navigate them, we are always on hand for our families through different communications methods, often this is virtual but occasionally face to face. One such instance is at our respite weekend in Hampshire, hosted by our charity partner. During this very special weekend we hold our Sibling Sunday Funday! which sees siblings invited together for a day of fun, support and interaction. This is part of our Sibling Services, launched in 2022, that see's monthly calls to our amazing Siblings for crafts and jokes and activities. Other events throughout the year include a Remembrance day, Christmas activities and birthday celebrations. This year we are focusing more on delivering more one to one engagements with families. As they are spread across the UK this may see some extensive travel from the Family Support team, but we recognise and appreciate the vital importance of in person support. We will continue to strive to improve our Family Support services as Emma and myself are totally committed and passionate about our roles at The CATS Foundation.
Biography

Nikki Backus

In 2010 I left my job in I.T. to have my girl boy twins, Sam and Ruby. Life was chaotic but I loved being a first-time mom. I started noticing Ruby slowing down in her milestones as she approached 8 months, but it wasn’t until 14 months with the sudden onset of seizures that we realized something was really wrong. At 16 months, heartbreakingly, Ruby was diagnosed with Sandhoff Disease and our lives changed forever. Over the next two years we focused on Ruby, her personality shining through, but devastatingly she passed away in 2013, she was just 3 years old. In 2014 I attended my first family conference and later that year was invited to join the CATS Foundation as their Family Support Officer, I have been in this role in one form or another since then. Being a Family Support Officer with my colleague Emma and working alongside Dan and Patricia and the wider team means the world to me.
I love working together to deliver new initiatives that better support our families, knowing that the whole team is as committed as I am about beating these diseases and changing the future of Tay-Sachs and Sandhoff Disease diagnosis.
Nikki Backus
Family Support Officer
Biography

Emma Murphy

Before I had my second born son, Stanley I worked in a family support role at the Sure Start centres for Action for Children, supporting families with children under 5 who experienced many different challenges. I had my Stanley in 2014 and in 2016 at 14 months old, he was devastatingly diagnosed with infantile Tay-Sachs disease. Our main source of support from the day of diagnosis was The CATS foundation. Stanley sadly passed away in June 2019 and a year later I started working for the CATS Foundation as a family support officer alongside Nikki. I love my job and am extremely passionate about supporting our families with my first hand knowledge of these diseases and how they affect the whole family. We are working to ensure that the support we provide to families continues to evolve, and part of that not only comes from our own experiences, but from meeting and listening to what our families need. We want to make sure that they all feel that they have the support they require from the charity.
I am extremely proud of the work we do and the positive impact it has on our Tay-Sachs and Sandhoff community. I believe that the support we are able to provide as Family Support Officers makes such a difference to the families, and it is something that we are passionate about at the charity.
Emma Murphy
Family Support Officer
Dan Lewi
We are proud of the support we can offer our families at The CATS Foundation. When our daughter Amelie was diagnosed with Tay-Sachs in 2011 there was no one we could turn to for guidance or to ask questions.
Dan Lewi CO-FOUNDER OF CATS