A 71-YEAR-OLD AMERICAN man is nearing Galway this weekend after setting out on a hike from Dublin.
John Ewen is raising both funds for research and awareness of Multiple Sulfatase Deficiency (MSD), an incredibly rare and fatal genetic condition.
John’s daughter Barbara was born with MSD in 1976 and lived until the age of 40 – well beyond the life expectancy of an MSD patient. The usual life expectancy is less than 10 years of age.
He is in Ireland raising funds for SavingDylan.com, an Irish charity named after a five-year-old Irish boy Dylan Finglas.
Dylan is one of only 62 or so living patients in the world who have been identified to date that suffer from MSD. Children with this disease are missing essential enzyme activity for normal cellular functions. Over time, a toxic material builds up within cells and they eventually reach brain cells. This results in devastating effects on the whole body and central nervous system.
Dylan’s dad Alan has been fighting to raise the €2 million to initiate research for MSD that could lead to clinical trials for MSD.
To achieve that, the family founded MSD Action Foundation, a registered charity which also goes by the name SavingDylan.com.
John, who has strong Irish heritage and suspects a genetic link between Ireland and MSD, began his walk earlier this week and has been raising funds along the way.
He told TheJournal.ie:
“I’m raising funds so that it doesn’t have to be a death sentence. I feel an obligation to help parents in the same situation as I was in
“Researchers think they have a few very positive approaches and we need funding to support that.
Physically I’m exhausted, my feet are hurting, but the Irish people have been so welcoming. People have been donating along the way – one pub in Moate is donating their tips.
“My hat is off to the Irish people.”
Alan Finglas said the gesture was “amazing”.
The two men have been in contact for a number of years, both aiming to move research on MSD forward. John is on the board of a newer foundation advocating for MSD in the USA called United MSD Foundation.
The two groups have an upcoming pre-IND meeting with the US FDA with a view to moving gene therapy forward as a solution for MSD. They are working together to promote and support MSD research that could deliver treatment.
“He’s been such a great support. It was something he could do and the hope was we’d get the support that such an effort deserves.
“We need more support to get to clinical trials – we have to keep moving forward. There’s no question that cost is the biggest obstacle – if we were able to fund it, we could be treating patients by now. It is a rare condition and that means that the will isn’t always there from industry unless we can prove that a treatment will work and is safe. This would de-risk it so that an industry investment could bring treatment forward.
“We very much depend on the generosity of the kind people who might make a donation. We are adamant that we will deliver for MSD patients but we need further support in the form of donations in order to do so.”
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