This workshop is free of charge and is aimed at and tailored to MDI members who are Parents/Carers. It will be virtually facilitated by Marianne Dwyer from Karuna, certified teacher in meditation, mindfulness and a qualified Counsellor, and Psychotherapist.
We are warmly welcoming any newcomers who would like to join a session to get a feel of what’s involved. You can choose to engage in discussion or just observe for now. The aim is to learn skills for daily life and to make self-compassion a habit.
Peer support is an explorative space with an opportunity for you to seek and give peer support to other members, as well as practicing self care with your peers and learning simple mindful techniques.
Parents and Careers Group is running on Tuesdays every month 7-8PM ON ZOOM
To register for this course contact your local family support worker or Karen at pcdw@mdi.ie / 086 60 66 105 as you can join at any stage.
This workshop is free of charge and is aimed at and tailored to MDI members who have Muscular Dystrophy It will be virtually facilitated by Marianne Dwyer from Karuna, certified teacher in meditation, mindfulness and a qualified Counsellor, and Psychotherapist.
We are warmly welcoming any newcomers who would like to join a session to get a feel of what’s involved. You can choose to engage in discussion or just observe for now. The aim is to learn skills for daily life and to make self-compassion a habit.
Peer support is an explorative space with an opportunity for you to seek and give peer support to other members, as well as practicing self care with your peers and learning simple mindful techniques.
Members with Muscular Dystrophy Group is running on Wednesdays every fortnight 11AM – 1PM ON ZOOM
To register for this course contact your local family support worker or Karen at pcdw@mdi.ie / 086 60 66 105 as you can join at any stage.
Are you interested in taking part in a series of free online workshops relating to disability issues? Independent Living Movement Ireland’s VOICE project will be running five workshops on Wednesday evenings from 7-8pm, starting on 13 September. They will be open to all disabled people in Cork, Kerry, Tipperary, Wexford, Carlow, Waterford and Kilkenny. The workshops are introductions to topics that are relevant to disabled people:
1. Medical model of disability – 13 September
2. Social model of disability – 20 September
3. Intersectionality and unconscious bias – 27 September
4. Housing and Housing and Disability Steering Groups (HDSGs) – 4 October
5. Collective action and disabled persons’ organisations (DPOs) – 11 October
On 1 September the HSE announced that Risdiplam (Evrysdi®) has been approved for reimbursement in Ireland. This makes Risdiplam the third SMA medicine available in Ireland, alongside Zolgensma and Spinraza.
Developed by Roche Pharmaceutical, Risdiplam is the only non-invasive SMA therapy, administered daily at home in liquid form by mouth or by feeding tube, making it more accessible and less invasive than other treatments.
MDI welcomes this announcement and recognises it is a significant milestone in the fight for access to life changing therapies. It is especially good news for younger people in the community and their families, expanding the treatment options available.
Risdiplam has been approved by the European Medicines Agency (EMA) for all ages groups with SMA Type 1, Type 2, or Type 3 with four or fewer copies of the SMN2 gene. This includes a recent approval by the EMA to extend inclusion to infants from birth to two months.
It is therefore disappointing that the HSE has only approved access for people in Ireland who are aged between two months and under 18 years of age.
As a result, there continues to be no treatment options for people in Ireland with SMA over 18 years of age. ZOLGENSMA is a gene therapy used to treat children less than 2 years old with SMA and Spinraza is also capped to people under 18 years of age in Ireland, even though it is available for adults in other European countries.
Individuals living with SMA over 18 years of age shouldn’t be discriminated because of their age. Access to these lifesaving therapies should be available to everyone, when there is evidence to show how important and effective, they are.
MDI call for the age restrictions to be lifted on access to Risdiplam in Ireland as SMA doesn’t go away when you become an adult, it continues to progress, and we want to stop or slow this down. No one should be left behind, and MDI will keep being a voice for this.
About Risdiplam
Risdiplam sold under the brand name Evrysdi™ is the third treatment approved to treat SMA in Europe in adults and children two months and older. It received European Union authorisation in 2021 for the treatment of SMA Type 1, Type 2, or Type 3 patients with four or fewer copies of the SMN2 gene.
It is an oral medicine that is designed to increase SMN protein levels in the central nervous system (CNS) and throughout the body. This SMN-enhancing therapy is a small molecule that targets the SMN2 gene and helps to increase the amount of stable SMN protein made by this gene. SMN protein is found throughout the body and is critical for maintaining healthy motor neurons and other functions such as swallowing, speaking, breathing and movement.
The HSE has included risdiplam as part of the Medicines Management Programme and has Managed Access Protocols for the product. Please, see the link below for the managed access protocol for risdiplam.
↘️Opportunity for people living with LGMD and their families to get together as a community and learn together.
↘️Hybrid event – you can attend online or in person at Muscular Dystrophy Ireland, 75 Lucan Road, Chapelizod, D20 DR77
↘️3 guest speakers: Marianne Dwyer will speak about ‘The importance of having a voice and feeling listened to; MDI member, Nicola Whelan, will speak about ‘living with LGMD’; and Pat Moeschen (USA) will speak about ‘Not living to wait, and not waiting to live, my journey with muscular dystrophy’.
Spinal muscular atrophy (SMA) is a progressive, rare, genetic, neuromuscular condition that affects the motor nerve cells in the spinal cord.
It impacts a person’s physical strength and can affect the ability to crawl, walk, move your limbs, breath, and swallow.
There are different forms of SMA, which vary in severity and impact they have on a person’s function.
The main forms of, ‘5q SMA’ includes SMA Types 0, 1, 2, 3 and 4.
People who have ‘5q SMA’ have two faulty copies of the SMN1 gene. This means they are unable to produce enough SMN protein to have healthy lower motor neurons, which is essential for activating muscles used for movement.
SMA does not affect a person’s ability to think, learn, and build relationships with others.
There is no cure for any form of SMA, but since 2016 drug treatments for 5q SMA have gradually been introduced worldwide.
Early treatment of SMA leads to better outcomes.
Multidisciplinary approach in combination with disease modifying therapies lead to better response.
Untreated SMA is the leading genetic cause of infantile death.
I am 52 and from County Laois. I have worked with Citizens’ Information since 2006 and I also do some voluntary work with Cuisle Cancer Support Centre. I go to Beaumont Hospital ever year for a check-up with consultant neurologist, Margaret O’Brien, as I have the neuromuscular condition, Charcot-Marie-Tooth (CMT). I also have dyslexia. My family support worker from Muscular Dystrophy Ireland, Marie Kealy, is in regular contact with me and is a great support.
As a child, I had club foot and they think this was associated with the CMT diagnosis. I was diagnosed in Temple Street at three or four years of age. I had to get different operations at Cappagh Hospital, Dublin, to fuse my feet and get the cartilage removed. Then I wore a brace. I now can wear normal, strong, supportive footwear. I know what to watch out for now. I always make medical professionals aware of my diagnosis. I feel sometimes medical professionals are not aware of CMT.
The only medical aids I require are insoles for my shoes. It is a long process to get them but I know in advance when I will need them changed so I start the process early so I am not without them. I have a blue badge (Disabled Person’s Parking Card (citizensinformation.ie) (Niall, please embed link) and I drive to work in an automatic car. I get tiredness in my lower limbs and I cannot climb stairs or steps. When going to different places, I always check and plan ahead to make sure they are accessible. I did not apply for a Primary Medical Cert, which you need in order to qualify for tax relief under the Disabled Drivers’ and Disabled Passengers’ Scheme, (Niall, please embed link) as I feel the rules are out-dated and not all disabilities are recognised. It put me off applying as I feel I didn’t fall into any of the criteria. I do a lot of walking and keep active. My limbs are in good working order. I do have high potassium and they think it is coming from the CMT as I have none of the usual health conditions that cause it. They have been doing genetic tests for the last three or four years which were sent to Germany to try and find out more about this and the results are now with my consultant.
The support I have received from MDI over the years has been very valuable. It is only in the last 10 years that I started looking into my condition. I did not know much before I started meeting more people with neuromuscular conditions, and during Covid I took part in the quizzes MDI ran. Before, if I was struggling, I did not know where to go for support. Now I know I can go to MDI. I hear about different member events that are happening, and Marie keeps in contact. I can discuss medical problems with her and she gives me advice on who to contact. Through my job, I am aware of support that people with disabilities are entitled to, so I like my job and being able to make people aware of entitlements for people with disabilities. It is good for mental health to get out too.
Thanks to you and MDI for giving me this opportunity and hopefully my story will help someone else.
MDI member, Paddy Hickey, is planning to walk over 200km from Castlebar to Enfield this August to raise awareness about the neuromuscular condition, Bethlem myopathy, and raise funds for Muscular Dystrophy Ireland. We were delighted to chat with Paddy about it recently…
Paddy, can you give us a little background about why you’ve chosen to do the walk?
My son, Ollie, was three or four when he was given the diagnosis of a muscular dystrophy called Bethlem myopathy. Bethlem myopathy is a rare condition affecting the skeletal muscles and connective tissue. The whole idea for the fundraiser was driven by Ollie – first and foremost to raise awareness about the condition and secondly to raise funds for Muscular Dystrophy Ireland.
Right now, there’s no cure for Bethlem myopathy. And you know you have the moments where you think, ‘What’s life going to be like?’ and stuff like that. I’d like to think that the more awareness that’s raised about every condition the more advances can be made. So, we want to put a big push behind it. And obviously, the selfish thing would be to say it’s because of Ollie. But it isn’t. The funds we raise won’t be for Ollie himself. It will be to raise awareness of the condition as a whole and raise funds to help MDI continue to build on providing much-needed services to those who need it most. And you guys at MDI are doing such great work. I think to raise a profile and shine a light on it is a big thing. I know there’s loads of people in Ireland that have their own reason for supporting it. We’re also delighted that MDI are planning to hold a webinar about Bethlem myopathy and the group of muscular dystrophies that it falls under, called the ‘collagen VI-related myopathies’ in a few months.
Brilliant, Paddy. And how old is Ollie now?
Do you know, he’ll actually be nine during the time I’m doing the walk. I think on that day we’ll be in Roscommon. My wife Claire and our daughter Lily and I will have a little party for him there.
And can you tell us a little about him?
Ollie is great. I know you always think your own kid is the best and all that kind of stuff but like, this kid is killing it. He’s in this music academy and he’s a drummer and he’s actually really fantastic at it. Recently he got up in front of a crowd of 200 people and he knocked it out of the park. And then he won student of the month after that.
He gets obviously a bit frustrated with the fact he can’t play football and stuff like that but then, I don’t know whether you know, the FAI (Football Association of Ireland) have this thing called, ‘Football for all’? He’s starting that in August and I’m going to do the coaching with him as well. But he buzzes for stuff like that like you know. But don’t get me wrong, if I said to him, “You can sit in front of the TV playing your PlayStation all day”, he’d do that too, like any kid and not because he has a condition. That’s because he’s eight and he wants to play PlayStation! And I’m actually talking to someone in the UK at the minute about a suitable bike for him that he can use with his splints as we love cycling. So, long story short he’s doing great. He doesn’t slow down and keeps going and, personality-wise, as everyone says, he’s been here before like. He’s a character!
Can you tell us about the route you plan to walk?
We’ll start from Castlebar on Sunday 13th August and finish in our hometown, Enfield on the 18th. So, the plan is to walk it in six stages:
Sunday 13th – Castlebar train station to Claremorris;
Monday 14th – Claremorris to Castlerea;
Tuesday 15th – Castlerea to Roscommon;
Wednesday 16th – Roscommon to Ballymahon;
Thursday 17th – Ballymahon to Mullingar
and finally, Friday 18th – Mullingar to Enfield.
I’ll be walking along the Royal Canal Greenway as much as possible. It’s a lot easier than walking on the road and much nicer. Claire wants to do some of the walk with me and our family will help out. We hope to stop at a restaurant at the end of the Greenway around Moyvalley and I think everyone in Enfield is hoping to meet up with us there so we will have a group to walk into Enfield together.
Is it going to be a huge challenge for you or how you think you’ll manage?
I’m confident of doing it in stages – around 30km to 40km each day. I’m walking an hour a day to train for it. The plan would be to head off around 10am every morning and finish up around six or sevenish, which in August should be absolutely fine. And the chances are, I’ll meet people along the way and take plenty of little breaks, and without being super technical about it, we’ll walk well. It’s kind of a privilege to be able to do it because you know there’s people that can’t.
I know you’re hoping that your eBay colleagues who live along the route will be able come and cheer you on. How can MDI members and the public show their support?
It would be absolutely brilliant if people could come along and join me for a little bit of the walk or to cheer me on. We’ll keep people up to date on social media about where we are on the route on different days. And really, whatever way anyone can support it, that’s what it’s all about. Although one doesn’t necessarily have to be there in person. Using social media to spread the word would be a great thing. I would be asking people to share and give messages of encouragement and all of that. Here in the actual eBay building in Blanchardstown, we’re going to set up a couple of treadmills in the atrium for colleagues who want to dedicate an hour’s walking. So, for every hour they walk, eBay will match that with a contribution of I think, €19 an hour. Ebay will also match every euro raised by staff up to the equivalent of $10,000 per person.
We wish you every success with your epic walk, Paddy, and we look forward to cheering you on!
About Bethlem myopathy
Ollie has a muscular dystrophy called Bethlem myopathy, which is a rare condition affecting the skeletal muscles and connective tissue. You can read more about Bethlem myopathy here Bethlem myopathy – Overview | Muscular Dystrophy UK. Right now, there is no cure for Bethlem myopathy but there are ways of helping to alleviate the effects of the condition. Research into muscular dystrophies like Bethlem myopathy is nevertheless developing and it is likely that clinical trials will start in the not-too-distant future.
We are delighted to share that Stephanie O’Hara and John O’Hara’s Darts fundraiser for Muscular Dystrophy Ireland held in June this year was a massive success.
The event, held in Gorey, saw an incredible turnout from the local community and with everyone’s support they managed to raise an amazing €3,642 for MDI.
A big thank you to Stephanie and John, your commitment to the cause will go a long way in making a significant impact in supporting individuals and families affected by neuromuscular conditions.
We also want to join Stephanie and John in acknowledging and thanking all the incredible people and local businesses who played a vital role in making this fundraiser successful. A big thank you to:
Ken Kenny – The Gallery Arklow, Michelle Donohoe – Curvy Boutique, Lauren Malone – Lauren Malone Academy, Lisa Gowan – Hickey’s Pharmacy, Colm Funge – Funge’s, Pamela Scott, Curtain and Bed Linen, Myles Doyle – organic food shop, McCabe’s Pharmacy, M Kelly Studio, Pat Kelly – Joanne’s Café, Sam Adrianos, Sue and Christy, Brennan Morri and Kell – Gorey Pharmacy, House to Home, Tara and Cheryl, Baker Street Studios, Whelan’s Pharmacy, Deirdre Byrne and John – Kia Ora Mini Farm, Pilgrims Shillelagh, Osbourne’s Daybreak, Roche’s Pharmacy, Grant’s Pharmacy, Andrea Star Nails and Beauty, Transport Cafe, the Card Factory, Claire Mc Govern, Institute of Further Education, Tommy Stafford, the Turning Wizard, Tommy Masterson aka King of the Sting and his mum Ann, Pat Braham, Ricky McGrath for the photography, and Alan Keoghan for the booking.
And everyone who bought tickets online and on the night.
We would like to join Stephanie and John in thanking the following sponsors:
Mylie and Mary Nolan, Sharon Nolan, Nolan’s Pub
Mick Gleason, Loch Gorman Arms Hotel
Robbie Kelly, Commercial Cleaning Services
Bill Cooney, Cooney’s Bar
Dano Kinsella, Gorey Print
Matt McManamon, Muscian
Ken Kenny,The Gallery Pub
Dave Redmond, DJ on the night
Martin Kinsella for doing MC
Kevin Charles for marking all the games.
A special thanks to all the players on the night:
Stephen Green
Andy Green
Shem Levingston
Conor Redmond
Gem Kearon
Dylan Fleming
Paddy Kirwan
Robbie Kelly
John Dempsey
Bill O Hara
Brendan Kenny
Ronnie Kirwan
Liam Burke
Mark Mcginn
Jeff Nolan
Davy Doyle
Joe Donohoe
Tommy Masterson
John O Brien
Stephen Byrne
Stephen Byrne jr
Shane Byrne
John O Hara
Richie Burnett
Last but not least, a big thank you to Simon Whitlock for a fantastic exhibition and night of darts.
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This workshop is free of charge and is aimed at and tailored to MDI members who are Parents/Carers. It will be virtually facilitated by Marianne Dwyer from Karuna, certified teacher in meditation, mindfulness and a qualified Counsellor, and Psychotherapist.
