Cure And Action For Tay-sachs (cats) Foundation

4th Tay-Sachs & Sandhoff Disease Family Conference

The 4th Annual European Tay-Sachs and Sandhoff Disease Family Conference at Disneyland Paris in June 2016 will enable all families throughout the UK and Europe with children affected by these rare and terminal illnesses to come together to hear the latest update on a potential cure for the diseases.

history Campaign has now closed

It ran from 12:00 PM, 4 December 2015 to 5:00 PM, 14 December 2015

Registered Charity in England and Wales (1144543)

Check mark Match funded

Campaign target

£7,370

Amount raised

£6,106

Donations

31

    Category

  • Community Support & DevelopmentCommunity Support & Development
  • Health/WellbeingHealth/Wellbeing
  • Medical ResearchMedical Research

    Helping

Location

  • To have the opportunity to meet other families makes such a difference.

    — James Alford

  • I made so many friends at the first conference I attended and Hope had such a great time.

    — Sally Crane

  • You learn so much during the conference about how to care for a child affected by the diseases.

    — Beatriz Fernandez

  • To have the opportunity to meet other families makes such a difference.

    — James Alford

  • I made so many friends at the first conference I attended and Hope had such a great time.

    — Sally Crane

  • You learn so much during the conference about how to care for a child affected by the diseases.

    — Beatriz Fernandez

Situation

It is extremely common for parents of children affected by rare and complex diseases to feel isolated and alone when receiving a diagnosis of Tay-Sachs or Sandhoff disease. They are routinely told that they will never meet another family affected by either disease and this can lead to huge problems as the parents believe they will never meet anyone else to share ideas on how to provide care.

Solution

Holding our annual family conferences enables families across Europe to come together once a year and to meet other families with children affected by either Tay-Sachs or Sandhoff disease. During the conference they are given an update on the current work towards a potential care, talks by medical specialists covering a range of subjects and opportunities to talk with other families to share caring ideas. Holding the conference at Disneyland Paris the children are able to enjoy the facilities.