THE ULTRA RARE DISEASE, DISORDER AND DISABILITIES FOUNDATION DIRECTOR'S REPORT 2017 TO 2018 Founder/Directors: Terence Hoey Maureen Hoey
2017-2018 DIRECTOR'S REPORT Introductlon The Ultra Rare Dlsease, Dlsorders and Disabilltles Foundation (URDDAD Foundation) is a charlty set up by two Dlrectors, Terence Hoey and Maureen Hoey. The Back8round of the charity is they are the 8randparents of Cavan Tommy Hoey. Their 8randson Cavan was a fNe year old child who took ill, hls parents thought he had a chlldhood illness, the Doctorfs thought he had glandular fever. He was not gettin8 better after six weeks and his wel8ht plummeted, his Doctor and hls parents admitted him to the Cornwall Hospltal. He remalned there for a fvrther six weeks and they carried out tests on Cavan, but the tests came back blank. The family became very worried and demanded that further tests be done. His bloods were sent to all major hospitals wlthln En8land. His parents dld not have to waft lon8 until hls results started coming back wlth various dlseases. It was Bristol Children's Hospital who came back with definite diagnosls of HLH and Cavan had to be rushed to Bristol. The Doctors told his parents It was ur8ent, he 8Ot there following a four-hour Journey by ambulance. When he arrived Cavan took a mai)r seizure and Doctors gave hlm 48-hours to Ilve. ThLry carried out further tests and they found Cavan had another dlsease called XLP. they were told that this was a very rare dlsease and that there were only l(K) children in the world with It. Cavan 8Ot through the 48 hours and mana8ed to fi8ht bacK he remained In hospital for one year as Doctors tried to fi8ht the HLH and XLP. In that time his grandparents set up the Cavan Tommy Hoev Trust. and Terence Hoey spent his time researching into XLP and HLH. At that time he went on the web but could not find much infonnatbon and he decided to set up a webslte for Cavan. He blo88ed day and nlght tellin8 the story about hls 8randson and hls work went vlral. He started getting results from all over the world. He reallsed very qUkk that HLH was a rare dtsease that seemed to affect people in America. He found that XLP was ultra-rare. He started to blog about rare diseases and with the help of Google Rare Dlsease, it went vlral. Every drug manufacturin8 companies started to set up sites for rare dlseases. They, for the first time, started to take notlce of Terence Hoey blo8 sltes and the media started taking notice. Terry and Maureen started holdin8 Rare Dlsease days and they put about raising awareness of ultra-rare disease. Thty followed the same plan as rare disorders and they found that drug manufacturers called ultra.rare disease as orphan diseases, so they started out to change the name -orphan- to -ultra" as it was a name that would cause a bi88er Impact on the web. They set out to blog day and night about ultra- rare dlsease, It set a fire on the web that drug companies and Doctors started to take notice. Thls was when Terry and Maureen set up the Foundation. they also found how havin8 a child with a rare and an ultra-rare disease affects the frdmily clrcle. The Foundation is movlng from strength to stren8th. It had to 80 through a very lean tlme due to fundraisin& the Foundatlon has found it very hard to raise funds due to beln8 a small charity and because of the bigger charities stsrtin8 thelr IV ad campal8ns, although the Foundation is holdln8 Its own and If s fvndratslng Is now showln8 an increase. The Foundatlon Is happy to report that due to It bringing on two new volunteers tt has 8reatly Improved the work the charity can do, and it frees up tlme for the Directors to do other work. They
are involved in settin8 up a cllent base of good fund ra15ers and also settin8 up road shows to raise awareness. The Foundation is also ralsln8 awareness of the web. We are 8lad to report that the Foundation is buildin8 up Its client base on the web and is now makin8 inroad5 on building a bi88er and stronger base with other groups all over the 8lobe. from America, South Africa. Australia, India, Pakistan, Iland and United Kln8dom. Thi5 work Is vitsl to the Foundation. In Northem Ireland It Is running road shows and is trying to break through the hold that much bigger charftles has on Northern Ireland. We have been building on our client base and working to increase this client base in Northern Ireland. The Foundation is also buildin8 a cllent base Sn Europe, this is vital to be prepared for Brexit. The Foundation is buildin8 thts base In readlness of a "No Deaf Brexh, we take this work as vhal to the Foundatlon and the European plan on Rare Disease. Fundlni We are addin8 to our cllent base daily. we depend on raising our funds throu8h collectlon boxes. The Foundatlon is settin8 its Sl8hts on raising funds In Northern Ireland and It Is Increasin8 Its numbers of clients within the area and is at present Increasing its supply of charity boxes throu8hout the Provlnce. Its main area is Belfast. we are seekin8 to expand on this. Dlrectors M r Terence Hoey had a kldney transplant in June 2017. He had a lot of Infections to 8et over but we are 8lad to report he Is getting back to fftness a8ain. Report ends. Slgned by Dlrectors: Founder/Dlrector Founder/Dlrector. Date: