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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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Just ban it altogether – it’s fairly clear that the lobbyists are a bunch of cowboys and the last thing the world needs is another legal nicotine delivery system.
@Lee King Buckett: would you rsther let your kid smoke tobacco or vape flavoured liquid, Lee?
@Lee King Buckett: Cigarettes come in a single flavour. Vaping can go one better as a flavourless liquid. As usual, the government is 10 years behind the curve when it’s already too late to contain the spread of vaping to children. They should also force all vaping liquids down to a lower range of maximum strengths so they function better as a quitting aid for existing smokers.
@John Johnes: Neither John, as far as I’m aware, it’s not a binary choice.
Plus, if you read the article you’ll see that kids who start vaping are more likely to move on to cigarettes.
@Lee King Buckett: kids who experiment will always do so. No causal effect from vaping to smoking. Just more likely that kids who will smoke will experiment with vaping.
@Lee King Buckett: that’s right ban everything, over charge for everything, tax us to the hilt, any other liberties you would like to give away.?
@John Johnes: il be honest I think both are equally bad. I just found out that my daughter vapes. She’s only 14. It’s definitely the sweeter labelled vape juice that catches her attention.
@Bala mc blaha: You can’t be overcharged if it’s banned.
@Lee King Buckett: Ridiculous. It’s the most effective quit smoking aid available. Helping millions including myself. Already heavily regulated in Europe, unlike the USA. That’s where you’ll find your anti vaping cowboys like Bloomberg.
@gordon o loughlin: that’s very unusual. I live near a boys school and see the kids in the lane at break, smoking not vaping.
@Lee King Buckett: i am very sceptical of the info that is present here Lee.
Just logically thibking – as you probably know , the taste of the cigarettes are disgusting for a nonsmoker.
Now imagine kids that are vaping tasty liquids trying a cigarette.
I am very doubtful of kids dropping tasty smoke for a cigarette.
However what i have no doubts about is that tobacco industry is losing shit loads of revenue because of the people hopping on to the liquid. And governments.
@gordon o loughlin: just to reassure you also, both are certainly not “equally bad”. Vaping is far safer than smoking. https://www.gov.uk/government/news/e-cigarettes-around-95-less-harmful-than-tobacco-estimates-landmark-review
@John Johnes: They could be encouraged to smoke neither… Just saying….
@Lee King Buckett: Yeah, and hand the market over to criminals. Prohibition doest work. We tried it before and it failed miserably.
@gordon o loughlin: Definatly not poor parenting anyway. It must be that darn juice I tells ya….
@Brian Hackett: Brian totally agree
@Pádraic Brady: What country has a government which was actually on the curve? I won’t stretch things by asking what country was ahead of the curve.
@Noel_Random: ya either way it’s not good whether it’s vaping or smoking. But the fruity flavors on vape juices should be illegal imo. Kinda like cigarette packs with nasty pics and warnings etc.
@Noel_Random: thanks for the info.
@Black Iron Tarkus: haha true story. Its just my daughter doesn’t live with me full time and her mam won’t talk to me but that’s a whole separate issue. Cheers for the vote of confidence though lol. Oh actually maybe it’s the poor spelling.. Yup it DEFINATLY is
Politicians are clueless about vaping. Flavours are crucial for smokers quitting tobacco. I quit a 30 year heavy smoking habit thanks to vaping. Now vape fruit flavour like apple and watermelon. Aged 57. The benefits of quitting tobacco are incredible. Could breath better and skin improved within weeks. My dentist also said my gums have never been healthier. This worrying about the kids is unfounded. The vast majority of vapers are adults and, according to the latest Healthy Ireland survey, it’s the most successful quit method. Far more effective than nicotine gums and patches and well ahead of the expensive tax funded HSE Quit site. Politicians need to look to the UK for proper evidence and not the click bait nonsense coming from the USA where misinformation is rife.
@Noel_Random: You’re extrapolating your experience to everyone.
I quit after 26 years with no vaping so no, flavours are not ‘crucial’ at all.
And nicotine is still a poison
@Lee King Buckett: well done you. Only a tiny minority manage to quit cold Turkey. Flavour is critical in switching to vaping from smoking tobacco. Nicotine is no more a poison than caffeine is. The dose makes the poison.
@Lee King Buckett: “I quit after 26 years with no vaping so no, flavours are not ‘crucial’ at all.”
What was that about extrapolating personal experience?
We’re all the center of our own little world it would seem.
@Noel_Random: critical?
This a rather big claim.
Got any peer reviewed studies to support this claim with verified data?
We know company’s did flavours to attract new users, they did this with cigs and now they are doing it with vaping. This isn’t about quitting for them. Its about getting new users hooked.
@Noel_Random: A tiny minority? Note sure where you’re getting your information Noel. Nicotine is a highly toxic chemical that’s used as a pesticide and weedkiller – it’s far more toxic and dangerous than caffeine. The truth is we have no idea of the long term effects of vaping. Are there less carcinogenics than in cigarette smoking? Yes. But the bottom line is you’re still imbibing a poison.
@Noel_Random: You might want to disclose your links to the vape industry when you make such posts. You clearly have vested interests as confirmed by your own twitter profile.
You are like a cigarette company worker defending cigarettes
@Noel_Random: I also quit a 30yr smoking habit with vaping overnight. Started with high nicotine levels and worked down to the lowest. The difference is like night and day in terms of my lungs, my cardiovascular capacity, taste buds, etc. I had tried everything and couldn’t stop smoking. People talking alot of nonsense here about something they know nothing about. The science on vaping vs smoking is extremely encouraging. If they want to regulate and/or ban something truly damaging to individuals and society, they should start with alcohol. Then see how the commenters here like it!
@Stephen Rogan: Did you not vape during daylight?
@Stephen Rogan: that’s great Stephen. So much ignorance around the issue now though that it’s actually keeping smokers from quitting as they think, like some posters here, that it’s a bad as smoking. So much misinformation coming from the USA. Hope Irish authorities see through it and focus on the science.
has nanny state nothing better to be concerned about. . .
@Bala mc blaha: you are right, if people want to build their homes with asbestos we should let them. The government are awful because they are trying to stop people killing themselves.
This vaping stuff is no different and should be banned, the sheer amount of chemicals in this stuff is doing nobody any good.
@Barry Somers: it’s a life saver for millions of former smokers globally. Sheer amount of chemicals? Lol. Check out what’s in an actually cigarette and what happens when it’s lit. https://www.gov.uk/government/news/e-cigarettes-around-95-less-harmful-than-tobacco-estimates-landmark-review
@Barry Somers: Its now of your business what I decide to consume, Barry. Kepp your moralising to yourself. Just because you dont like it you actually belive no one should be allowed. Unreal.
@Black Iron Tarkus: it is actually, its everyone’s when that consumption costs the tax payer money due to increase health costs.
@Barry Somers: except vaping is bringing smoking rates down.
ah so they’re coming after vaping now that the tax on tobacco income is starting to drop
@Sean Stevenson: the tax was never a benefit to this country.
Smoking related health issues cost the HSE more then the tax take was.
@Barry Somers: That’s not true. Not to mention the fact that some smokers die younger, and therefore don’t need their pension paid in subsequent decades. This isn’t apparently about money at all, but a strangely Puritan reaction against people who simply happen to have a sweet tooth. A lot of us outgrow that; some don’t and why shouldn’t they enjoy it? Next some miserable group will be banning aftershave because they personally can’t enjoy any.
Smoked tobacco products for many years and developed health problems. Switched from tobacco to vape. Took a bit of time then I started experimenting with flavours and now I prefer vaping flavours more than the nicotine content.
Here in Holland all flavours except ‘tobacco’ are likely to be banned soon, so I’ve simply tried a couple well before that legislation comes into effect (unclear precisely when) and settled on one that’s somewhat sweeter than ‘regular’.
I don’t mind such a law, even if I did use to mix some ‘honey’ flavour into my liquid. It’s just a matter of seeing your vaping for what it is: a safer way to satisfy one’s nicotine addiction.
@Mick Tobin: I can’t understand the logic of only allowing tobacco flavour. You’d almost think they were trying to protect the tobacco cigarette industry?! The last thing I wanted to vape after quitting cigarettes was a tobacco flavour that reminded me of the real thing. Can’t stand the smell of smoke now either.
@Noel_Random: Thing is Noel, I don’t even really recognise it as ‘tobacco’. I have the battery set to lowest, and the nicotine level isn’t too high either. A while ago I took a drag from a cig & it made me completely dizzy. As for that it’s disgusting, yes absolutely.
Some people seem to take pride in steam train antics with their massive plumes, and in some shops it’s hard to breathe, and I don’t get why people want that.
@Mick Tobin: oh those annoying cloud chasers! Childish behavior and feeds the anti vape lobbyists.
I have no links at all to companies that sell vaping products. But I have seen how popular comics and cartoon books are to collectors. Surprised at a public representative deciding to monitor public tastes and trends as though it were any business of the Dáil to set rules for adult consumption. Is it really so impossible to imagine that there are other people in the world with different tastes from yourself?
Haaaaaa
Nanny state wins again.
You’d think they would actually ban cigarettes first but since that would lead to a loss of revenue they won’t.
Ah sure why not ban alcohol, sweets, fast food, cars that go over 120kph, there all dangerous.
have your say