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.
June 2016 - June 2016
Cure And Action For Tay-sachs (cats) Foundation
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.
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.
Provide an update on the research for a cure
Activities» Invite our research team to give an detailed presentation on their work.
» The charity will give an update on the research work in simpler language for families to understand.
Success will be each family understanding how the research has progressed and what the next stages are for it.
Arrange fun activities at Disneyland Paris
Activities» Liaise with Disneyland to arrange the characters to meet the children
» Arrange wheel chair access for all the children so they have access to all the rides.
Success will be all the families and children enjoying their time at Disneyland Paris.
Provide a forum for parents to meet
Activities» Hold a "parents session" during the conference to discuss how they cope with a diagnosis
Success will be all the parents making new friendships which they can maintain.
The family conference will give families the opportunity to make new friendships with parents who are also coping with a child affected by Tay-Sachs and Sandhoff disease. Its long term success will be measured by these friendships becoming long standing and we will facilitate this through the use of social media. As the children who are affected by the diseases are unable to travel long distances regularly, the family conference is the one event they all look forward to and plan to attend.
The main risk surrounds the children not being well enough to travel to the conference. We have now changed the date to June (our previous conferences have been in October) and we believe that this time of year when the weather is better will mean more children can attend. Howwever, as Tay-Sachs and Sandhoff disease are such complex diseases we cannot guarantee that every family who wishes to attend will be able to at the time.
Our donors will be added to our bi-monthly email newsletter list where there will be regular updates of our work. We will invite our donors to attend the conference so that they can understand first hand the impact a family conference has on a disease specific community.
Budget - Project Cost: £14,739Loading graph....
Amount Heading Description £1,500 Room hire Cost of renting a conference room at Disney for 2 days £750 AV Audio Visual for 2 days at the conference £3,275 Catering Conference catering for 2 days £9,214 15 family rooms 3 nights for 15 families (45 people) at New York Hotel
Our family conference will take place at Disneyland Pairs in the New York Hotel. There are excellent conference facilities at the hotel and all the rooms are wheel chair friendly which is vital. The hotel is located near to the Disney Parks so that each family has easy access to enjoy them on the last day of the conference.
Our conference will benefit all the families across Europe who are able to attend. Also invited are families who have lost their children to the diseases so that they can continue to feel a part of our community where they have valuable experience in caring for a child which can be passed onto new families. The medical specialists who attend will also benefit from meeting the families and hearing how they can help with the care for a child.
The charity is best placed to arrange the family conference as we have experience of organizing these large and complex events. We understand that the format has to be flexible and all the speakers must be able to deliver a talk that can have a positive impact on those who attend. Our previous conferences have been very well attended and the feedback we have received has spoken highly of the experience each family had during the event.
Read more about the Charity running this project.
Daniel is the Chief Executive and will be involved in organising the event as well as chairing the talks during the conference.
Patricia is the main organiser of the conference and will be liaison for each family who attends and for the overall running of the event.
will pay for one night at a Disneyland Paris Hotel
To have the opportunity to meet other families makes such a difference.