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Powerful voice
The CATS Foundation
 Founded in 2011
 Supports families affected by Tay-Sachs and Sandhoff
 Provides equipment, respite trips and a support network
 Support and involved in the the research for a potential treatment
for Tay-Sachs and Sandhoff
www.cats-foundation.org
What is Tay-Sachs
 Terminal illness in children
 Inability to produce a vital enzyme in the brain
 Genetic condition
 Affects 1 in 320,000 with a carrier rate of 1 in 300
 Lose the ability to walk, crawl, speak, see, and hear
 Total regression in all their skills and become 100% dependent on
their parents and carers
www.cats-foundation.org
Powerful voice – the start
 Amelie
 Suffers from Tay-Sachs
 Diagnosed in 2011
www.cats-foundation.org
Working together
 Empower patient families
 Nominated patient organisation
 Working towards a treatment for the diseases with Professor Cox
 Close to starting a trial for a potential ERT treatment
 The only patient registry in Europe for Tay-Sachs and Sandhoff
 We want to make sure children have a future
www.cats-foundation.org
Powerful voice – the start
 Amelie
 Suffers from Tay-Sachs
 Diagnosed in 2011
www.cats-foundation.org
Powerful voice – the future
www.cats-foundation.org
Powerful voice – the future
www.cats-foundation.org
Powerful voice – the future
www.cats-foundation.org
Thank you
Email: dan@cats-foundation.org
www.cats-foundation.org

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The cats foundation power voices dan lewi - crdn summit 2016

  • 2. The CATS Foundation  Founded in 2011  Supports families affected by Tay-Sachs and Sandhoff  Provides equipment, respite trips and a support network  Support and involved in the the research for a potential treatment for Tay-Sachs and Sandhoff www.cats-foundation.org
  • 3. What is Tay-Sachs  Terminal illness in children  Inability to produce a vital enzyme in the brain  Genetic condition  Affects 1 in 320,000 with a carrier rate of 1 in 300  Lose the ability to walk, crawl, speak, see, and hear  Total regression in all their skills and become 100% dependent on their parents and carers www.cats-foundation.org
  • 4. Powerful voice – the start  Amelie  Suffers from Tay-Sachs  Diagnosed in 2011 www.cats-foundation.org
  • 5. Working together  Empower patient families  Nominated patient organisation  Working towards a treatment for the diseases with Professor Cox  Close to starting a trial for a potential ERT treatment  The only patient registry in Europe for Tay-Sachs and Sandhoff  We want to make sure children have a future www.cats-foundation.org
  • 6. Powerful voice – the start  Amelie  Suffers from Tay-Sachs  Diagnosed in 2011 www.cats-foundation.org
  • 7. Powerful voice – the future www.cats-foundation.org
  • 8. Powerful voice – the future www.cats-foundation.org
  • 9. Powerful voice – the future www.cats-foundation.org