A charity boss who lost his daughter to a genetic skin blistering condition will pull a 16-year-old boy in a specially converted shopping trolley from Clifden to Galway next month.
Robin Hood, the head of corporate relations with Debra Ireland, will be accompanied by a dozen supporters on Sunday September 18 in this unique fundraising venture for the charity which provides patient support services and conducts research into treatments and cures for people living with Epidermolysis Bullosa, (EB ).
Dublin teenager Evan O’Gorman, who has the condition, will be towed in the trolley which was last used by Mr Hood to pull his late daughter, Alex, in the London Marathon in 2001. He raised £13,000 then for the charity.
He will set off with his supporters on the 50 mile challenge which will begin at 8am and end at the Clayton Hotel in the city at 7pm. Their arrival will be celebrated with a party at the hotel and everybody is welcome, he says.
“Evan and I will head down from Dublin to Clifden on the Saturday night and have permission from the Gardai to collect in local pubs. The following day he will be travelling in the trolley which was specially adapted by an engineer,” says Mr Hood. “It was from the supermarket where I shopped when living in Scotland. I pulled my daughter Alex in it in the London Marthon in 2001 and kept it ever since. During the Galway journey we will have support vehicles at the front and back of us and fortunately the trip will be more downhill than uphill. If people would like to stop and give us a donation or contribute online we would be very grateful. We have distributed 100 sponsorship forms already.”
A chance meeting at the Clayton Hotel forged a link between the charity and the hotel’s restaurant manager, he says.
“I was meeting a young lady called Sarah McDonagh, who works in Boston Scientific, about fundraising. I went up to reception with a leaflet about our charity and asked if it would be OK to sit there with her. The receptionist took the leaflet and George Thompson, the restaurant manager, came over to me and told me his wife’s two uncles had died from the condition. In fact, her grandmother, who lives in Connemara, had four children with EB.
“When my daughter was two I had some friends coming over to me in Scotland, one of whom was Dr John Casey from Clifden. He saw my daughter and I told him she had EB. He said he had two patients with it.”
He says Debra Ireland hopes to raise €10,000 from the fundraiser which will bring back many memories of his young daughter who died after battling skin cancer for 18 months in July 2008. [EB sufferers are highly susceptible to a very aggressive form of skin cancer from as early as their teenage years.]
Mr Hood, a former company owner who gave up his business in England to work as a voluntary fundraiser for DEBRA, says EB affects about 300 people in Ireland and half a million around the world. There is currently no cure for the condition.
“The skin of people with EB is as delicate and fragile as the wings of a butterfly and just as easily damaged. EB has been described by a consultant dermatologist at Our Lady’s Hospital as ‘easily the most debilitating and devastating disease I have ever seen’.
“It is an agonisingly painful disorder and leads to disability and deformity. My daughter Alex used to wake up with as many as 40 blisters each morning from the friction of her turning over in bed during the night. She had to have her food pumped into her stomach as she blistered in her mouth.
“Sadly my dream of getting a cure for her never came true as she died. After battling with skin cancer for 18 months she lost her fight for life on 17th July 2008. Alex asked me to continue with my fundraising work so others would not suffer as she did. This is what I am continuing to do.
“The 47 DEBRAs worldwide have now put over €11 million into research and there is light at the end of the tunnel in the form of a new collagen injection. If it had been available three years ago Alex would still be alive. This injection called Fibroblast stimulates the wound-healing process.
“The researchers have identified 14 of the genes responsible and can now cure EB in mice. Clinical trials on children with EB could happen in the foreseeable future. This will only happen with continued financial support.”
Mr Hood says DEBRA Ireland’s financial situation is “desperate”. “In times of recession the smaller charities can be forgotten and thus become the underdog. The monies we raise go towards our programmes which include our patient support worker who travels around Ireland working with families, the EB nurse in Our Lady’s Hospital Crumlin and our research, which includes a skin cancer research programme.”
Meanwhile research is under way at NUI Galway to develop a wound dressing for people suffering from EB.
Dr Wenxin Wang, the scientist leading the research team, was awarded funding in March from Science Foundation Ireland to undertake a four-year project into EB and diabetic ulcers.
One of the main goals of the research is to develop an advanced wound dressing system for the treatment of recessive dystrophic EB.
Robin Hood says Dr Wang has many years’ experience in the field of biomaterials and his work has already generated excitement among the EB research community.
“It has enormous potential to alleviate the burden of EB. One of the major difficulties for people with it is the fact that blisters frequently develop into painful wounds which are slow to heal. These wounds can become chronic and may not heal for months or years. They are then open to infection, extremely painful and very debilitating.
“In addition, these chronic wounds are the sites where an aggressive form of skin cancer can start. This form of skin cancer is a major concern for those with recessive dystrophic EB as it affects 80 to 90 per cent of those affected and results in a dramatically reduced life expectancy.”
The wound dressing being developed by Dr Wang will function not only to protect wounds and aid healing but will also contain copies of the collagen 7 gene missing in people with this form of EB.
“At room temperature, the dressing is in liquid form. However, upon being applied to wounds on the skin surface the solution quickly forms a gel to cover and seal the wound site. The researchers hope that these properties of the wound dressing, together with the delivery of the collagen 7 gene, will result in enhanced wound healing. This ‘smart dressing’ should also have direct applications for other forms of EB.”
For further information on DEBRA Ireland telephone (01 ) 4126924 or log onto www.debraireland.org
