The Cavan Tommy Hoey Trust sets up The Ultra Rare Disease,Disorders &Disabilities Foundation the Trust for a long time has felt it should build a rare disease foundation in Northern Ireland both Terry and Maureen Hoey the founders of the Cavan Tommy Hoey Trust felt that if they were going to get the message out about children and Ultra Rare Diseases they would have to build a trust that would meet the needs of the patients and the families They have worked hard on the Trust but they both felt they had to take it to the next stage
The Directors of the foundation met to decide the way and the shape of the foundation as Terence Hoey and Maureen Hoey children who have a Rare Disease and an Ultra Rare Disease, the foundation has went along the lines of their experiences in how it affects both the patients and the families who has a child or an adult with a rare or an ultra rare disease and a child or an adult who has brain injury and is or a disability to enable the Foundation to be one of the world leaders in helping families and children with the effects of a Rare Disease as both the major Directors families have been touched and are living with a rare disease or an ultra rare disease,Disability,Complex Needs,Brain Injury,Learning Difficulties,and behavioural problems, the foundation knows the complex needs of a family and just what it takes to cope with a child or an adult who has been left with major disability caused by a disease.
The foundation urgently needs offices but it is also aware of the needs of children who also have a greater need for premises and care facilities as the foundation wants to be a listening company it also wants to meet the needs of the families of the children and not missing out the siblings of the children and helping them work through the fears they have,the company is in no doubt it is facing an enormous task and that the needs of the families are great we know the need for care services is vital to enable the families to be able to have short breaks just like any other family to go shopping or to go out for a meal we know how vital this is if we are to keep families together the need for special time is vital to rebuild the family unit,The Foundation wants to meet these needs and to help the whole family unit.
We know that this is going to be an uphill struggle and we also know that we will need funding, to help the family we will be helping the children we want to be there for both mum and dad and brother or sister of the patient who has his or her own massive struggle ahead of him or her we want to be there for both of them we want to help them at every corner they have to turn,We are asking you the reader to feel how our families feel their lives have been blown apart it’s not of their making it’s just that its genetic and it could happen to anyone out there the Patients need our help now the families who we deal with need our help they need it today not tomorrow .
We ask you to put your hand in your pocket and with us help these children and their families deal with the effects of an Ultra Rare Disease or the aftermath of a Diagnosis of a child or an adult with a Rare Disease all that it takes is the trigger to change a family’s life for ever and it is all in the genes and Rare Disease Usually strikes children when they are five-year old We NEED YOUR HELP AND WE NEED IT NOW you can join our Rare Diseases Find A Cure Campaign Text Us @RDFC13 £2/£5/£10 to 70070To Donate Now. eg RDFC13£10 or go to http://uk.virginmoneygiving.com/charities/TheUltraRareDiseases&DisabilitiesFoundation or http://www.easyfundraising.org.uk/causes/urddad/ or by Bank Transfer To
The Ultra Rare Disease,Disorders & Disabilities Foundation Charity Number NI 202130 Danske Bank Sort Code 95-06-79 80014729 NIC Charity Number 102130 Contact Address The Ultra Rare Disease Disorders And Disabilities Foundation 86 Palmerston Road Sydenham Belfast Northern Ireland BT41QD Telephone (+44) 0 890 650 65406