Tag Archives: Vera Twomey

Medicinal cannabis activist Vera twomey (above) and Minister for Health Simon Harris (top)

An open letter to Minister for Health Simon Harris from medicinal cannabis activist Vera Twomey, whose daughter Ava, a sufferer of Dravet Syndrome, secured a licence to use the oil to control her seizures.

Dear Simon,

Hi, it’s Vera here –  Ava Barry’s mum. Just a quick update. Ava’s doing great, bit of an ear infection this week, but she’s rallying again, thank God.

As you know, I’m from a small little village called Aghabullogue [northwest County Cork]-  fierce Fine Geal country, actually you would get a great welcome if you ever decided to pop by.

Anyhow, I just wanted to let you know that down our way ordinary people like us are doing their research and all around the area people are using medical cannabis to heal their bodies and control and cure many serious conditions.

It’s great that people are able to find research and educate themselves on medical cannabis, isn’t it?

It would be of great benefit to all of us if our consultants and doctors were offered the opportunity to learn about medicinal cannabis its benefits and the appropriate dosage, etc. and we could work together for our better health.

I was wondering are you planning on doing anything of real value for us regarding this matter?

Aghabullogue is a fantastic spot you know but it’s very small i’m just pointing that out because there are communities all over the country much bigger than ours where people are using medical cannabis to improve their lives in massive numbers.

Remember I told you on the phone that time that you could do something really great for the people. I wonder were you listening or were you just annoyed to have to talk to that cheeky mare, aka me. well. Ether way you still could. I hope you decide to do so. We would be very proud of you to do so.

I also just wanted to let you know ill be calling in to see you there in the Dail in November with a few friends of mine Hannah Deacon Callie Blackwell and Danielle Davies.

They are great women Simon and help us, if you imagined I was firey, you’re not going to know what hit Dublin when these ladies arrive with the stories of how medical cannabis has saved their children’s lives.

So we hope we will see you there that day for a frank discussion. As they say it’s good to talk.

Seems to me it would be really a great plan to move the debate on medical cannabis back into the dail chambers for us and leglislate so ordinary people can get the medical support they need.

We will look forward to seeing you in November.

Best Regards,

Vera

Vera Twomey (Facebook)

Previously: Meeting Leo

A two-minute highlight from Thursday’s Broadsheet on the Telly.

Cork-based cannabis oil activist Vera Twomey recalls meeting Taoiseach Leo Varadkar at the ‘People of the Year’ Awards last April.

Vera secured a cannabis oil licence for her daughter Ava, who suffers from Dravet Syndrome, after a three-year long battle.

The part of Vera’s award speech directed at Mr Varadkar was cut out by RTÉ in a highlighted tweet from the station on the night, but can be watched here

Vera appeared on the ‘telly’ with brain tumor sufferer Kenny Tynan, who, despite securing a licence, has been told costs obtaining the oil (approx €5,000 every three months) will not be reimbursed.

Full show here.

Thanks Dermot Bohan

Above from left: Gino Kenny TD, Vera Twomey, barrister Niall Neligan, Kenny Tynan and and pro-medicinal cannabis GP, Dr Garreth McGovern

This afternoon.

Leinster House, Dublin 2

The launch of [legalise cannabis  group] Fweed’s ’21st Century Approach to Regulating Cannabis’ by law academic Niall Neligan with independent TD Gino Kenny, activists Vera Twomey, Kenny Tynan and medic Dr Garreth McGovern.

At 3pm, parents of children, and individuals, in need of medicinal cannabis are invited to meet TDs in the Dáil, Noreen O’Neill,  whose son Michael suffers seizures from bilateral frontal polymicrogyria, will describe her struggle to get oil for him.

Fweed

Yesterday: A Chance To Talk About Medicinal Cannabis

Previously: Vera Twomey on Broadsheet

Update:

G’wan the Vera and Kenny.

More as we get it.

Hannah Deacon?

Callie Blackwell?

Earlier: It’s Oil Right, Innit?

Meanwhile…

Yay.

UPDATE:

Today.

Westminster, London

Cork mum Vera Twomey, who secured a licence for medicinal cannabis for her daughter Ava,  will speak in the House of Commons this afternoon..

Vera became friends with Hannah Deacon, whose six-year-old son has severe epilepsy, when they both lived in Holland to receive medicinal cannabis for their children, as they lived on the same street.

Yesterday, Ms Deacon was told her son Alfie Dingley would be granted a licence for medical cannabis – becoming the second child with epilepsy in the UK to be granted such a licence.

Via Vera Twomey (Facebook)

Related: Home secretary announces review into medicinal cannabis use (The Guardian)

Previously: Vera Twomey on Broadsheet

A Facebook post from Vera Twomey yesterday

Vera Twomey received a People of the Year award last week for her successful campaign to obtain medicinal cannabis for her daughter Ava, a sufferer of Dravet Syndrome.

Ms Twomey has claimed she confronted Mr Varadkar before the awards ceremony about the passage of legislation to make it easier to access cannabis oil.

Describing him as “rude”, Ms Twomey said the Taoiseach told her he could not support the bill as he had not received promised amendments from its sponsor, Solidarity–People Before Profit TD Gino Kenny.

Ronan Emmett writes:

Is he a liar or not? This cuts to the very heart of our democracy and people like him get away with it when good people say nothing.

Is Leo a liar? If he is he needs to go. This isn’t funny anymore. It’s time for some radical action.

Vera Twomey (Facebook)

Previously: And It Stoned Me

Vera Twomey on Broadsheet

Last night.

Vera Twomey accepting her ‘People of the Year’ award for her struggle to obtain medicinal cannabis for her daughter, Ava.

David T writes:

Vera’s acceptance speech included criticism of Leo Varadkar [who was present] and his government’s policy in this area.

RTÉ, in their highlights clip (above), has chosen to edit this out. It was a magnificent speech and took a lot for Vera to speak out… Unbelievable censorship from the state broadcaster.

Anyone?

Historian Catherine Corless and campaigner Vera Twomey among winners honoured at People of the Year Awards (Independent.ie)

Meanwhile…

In fairness.

Luke Ming Flanagan (left) and Gino Kenny flank Vera Twomey at Dublin Airport in April, 2017 after Vera obtained medicinal cannabis for her daughter Ava in Barcelona, Spain.

Luke ‘Ming Flanagan MEP writes:

Vera Twomey has fought a well documented battle to gain access to a life changing cannabinoid based medicine for her daughter Ava Barry.

She now faces another battle in order for her daughter to continue using this same medicine.

The reason. The HSE are refusing to fund it under the Long Term illness Scheme.

Not because of medical reasons but purely for bureaucratic reasons.

Furthermore the HSE are now trying to force Ava Barry’s family to use another product sourced in the Czech Republic which does not have the support of either of the two consultants working with the child.

Worse still is the fact that the family would not get the equivalent medical support in the Czech Republic that they are currently receiving in The Hague.

The HSE are telling us that ‘Market Authorisation’ is the reason for this issue now arising. They say that due to this they cannot fund the medicine under the Long Term Illness scheme.

However it is clear to anyone that if the state wished to fund the medicine under another mechanism then they could. We are talking about €1600 per month. A drop in the ocean of HSE funds.

Vera Twomey and her family have climbed a mountain in order to get access to a medicine which has improved their daughters life above and beyond all expectations.

Having climbed this mountain it would be farcical and potentially tragic if all this progress was halted because a government bean counter couldn’t work out how to get few extra beans out of the jar.

Luke ‘Ming Flanagan MEP

Previously: Vera Twomey on Broadsheet

 

 


From top: Vera Twomey; Terry McMahon

Yesterday, Minister for Health Simon Harris granted Ava Barry, age seven, a special licence to be prescribed medicinal cannabis at her home in Cork.

Ava suffers from Dravets Syndrome and her parents Vera and Paul say cannabis oil, prescribed in The Hague where the family moved in June, has helped preventtheir daughter from having seizures.

Before going to the Netherlands, Vera took a well-publicised trip to Spain to secure the oil and take it back to Cork.

Terry McMahon writes:

Got a text late one night. Someone was looking for my number. Was it okay to pass it on? Anybody who wants my number can have it. Couple of minutes later the phone vibrated. Rarely answer the thing at night but this was different. She introduced herself. Voice unmistakable. Softer than I’d heard it on television.

But those circumstances were different. I wasn’t trying to rob her daughter of life-saving medicine. That was the first time I spoke with Vera Twomey. Five hours later we were standing on a security line waiting to board a plane to Barcelona.

Sitting in the airport that morning with Vera and her husband Paul should have been uncomfortable. Should have felt awkward. Should have had some kind of logic to make the three of us feel like we knew what the hell we were doing. But we didn’t. We were going on instinct.

A little girl was in a fight for her life against the gigantic ego of a Minister For Health. Nothing else mattered. That Minister refused to believe in miracles. Refused to believe in any power other than his own. Refused to recognize he was being given a lesson on the power of love by the parents of the little girl that he was intent on ignoring. But you don’t ignore Vera Twomey.

Paul walked us to the security gates. Me and his wife. Two strangers. A brief holiday is all. The camera hanging against my chest with the lens exposed. A tourist cliché. Paul said look after her. Out of earshot. A whisper. Humbling to shake the hand of such a man.

We were being watched as we went through security. Vera had been arrested a short time ago. Her arrest made headlines around the world. A mother’s love etched on the front page. They didn’t try to hide the fact that we were being watched either. But they didn’t know they were being watched too. The camera lens was exposed for a reason. The red light recording sound and vision virtually invisible. Hiding in clear sight.

We arrived in Barcelona. Already getting to know each other on the plane. No time for pretense. Everything from the heart. Bullshit free. We were staying in Las Ramblas. Iconic hotel. Perfect rooms. Barcelona beauty. We had less than twenty-four hours.

And every minute would be used. Some of the most remarkably humane people a soul could yearn to connect with appeared. Courageous, inspiring and generous beyond measure, these people put everything on the line to help others. And were reviled for it. Mistrusted. Criminalised. While our Minister sat on a fat salary for doing nothing.

Sometimes all it takes is a simple plan. Do the right thing. We all know what the right thing is. Most of the time. But Vera and Paul, and their incredible daughter Ava, had been repeatedly lied to by the Minister and his coterie of cowards. Then maligned. Then ignored. Then politely dragged away by police.

Vera needed a new plan. And she hatched it in Barcelona. The food tasted incredible that night. As did the wine. As did the air. That’s how bravery affects the senses. The opposite of how our Minister’s cowardice dulls them.

Back in Dublin next morning security was waiting for us. More of them than usual. Ready. I held back. Separated. Not to conceal anything. The camera was in full view. Except for the tiny red recording light. They searched her. They searched me. They questioned us. They could have been bastards. But they weren’t. They did their job. Meticulously.

But you could tell their hearts weren’t in it. Their hearts were bigger than this bullshit charade. They were mothers and fathers. They were in awe of Vera Twomey. Almost as much as I was.

That’s the impact Vera Twomey has. The impact Paul has. They make you believe corrupt politicians can be exposed. Because they just did it. They make you believe in the impossible. Because they just made it happen. They make you believe love moves mountains. Because it fucking does.

Terry McMahon is a homelessness activist, acting coach and award-winning film director. Follow Terry on Twitter: @Terrymcmahon69

Previously: Vera Twomey on broadsheet

This afternoon.

Leinster House, Dublin 2

Vera Twomey (pic 3) joins protestors to support People Before Profit TD Gine Kenny’s bill to legalise medicinal cannabis, currently being debated in the Dáil.

Vera says her daughter Ava’s sezures from Dravets Syndrome

Watch proceedings here

Top: Solidarity People Before Profit TDs Paul Murphy. Richard Boyd Barrett, Gino Kenny and Brid Smith talking to the media before the debate.

UPDATE:

More as we get it.

Update:

The Government has agreed to allow the progression of legislation to provide for medical cannabis to the next legislative stage.

The move is despite the fact that the Oireachtas Committee on Health recommended withdrawing Gino Kenny’s bill because of “fundamental flaws” in the legislation.

Minister of State at the department of Justice and Equality David Stanton said he was of the view that “if you have a very flawed piece of legislation, it might not be possible to amend it, perhaps it should be redrafted and resubmitted”.

However he said there seemed to be a consensus among TDs that the bill should proceed to Committee stage in the Dáil.

Medical cannabis legislation progresses to next stage (RTÉ)

Rollingnews