Noeleen Gannon, Club Secretary of M&F United Powerchair Football Club, shares the impact of MDI’s support.
We are incredibly grateful to have received two Strike Force Power Soccer chairs for our club through funding provided in conjunction with MDI and The Lords Taverner’s. This generous support means so much to our club and to all of our players.
David Kennedy describes the impact of early support from MDI’s Clinic Liaison service following his diagnosis.
I still remember very clearly the day I was first diagnosed with FSH muscular dystrophy by the neurologist in Beaumont Hospital. As I left the consultation, I genuinely felt that I was on my own and unsure how to navigate what lay ahead. Just as I was about to leave the hospital, Dr. Lefter called me back to introduce me to Sinead as the Clinic Liaison Officer with Muscular Dystrophy Ireland. After spending time with her that morning, I left Beaumont in a completely different frame of mind – reassured, supported, and confident that I was not alone.
Una Ennis recalls her first interaction with MDI after receiving her son Archie’s DMD diagnosis.
Una Ennis reflects on her first interaction with MDI: “It was a couple of days later [after receiving her son's diagnosis] when I made that call to MDI. Sinead [CLO] answered the phone. I can barely get the words out,”
Liz Dickson on the experience of Barretstown with MDI and what it meant for their family
We've had the pleasure of going to Barrettstown twice now with MDI and it's been such a great experience. For Tommy and Grace, going somewhere that's so child and family-centred and completely accessible is really joyful. The activities are so engaging and fun. They loved trying archery and horse riding, but I think kayaking was a real highlight for them.
Sharing Jake’s experience, Elaine O’Dwyer highlights the value of connection and community through MDI’s Youth Service
“MDI’s youth service and youth clubs have meant so much to our family. Through the service, our 12-year-old son has had the opportunity to build friendships and grow in confidence.”
MDI’s Counselling and Information Advocacy service formed a key part of the support Claire Ellis received after her diagnosis
My name is Claire and I was diagnosed with the extremely rare, miyoshi distal myopathy last year. Needless to say it came as a shock initially, but then the range of emotions from fear, disbelief, anger, sadness, and especially the isolation of such a diagnosis, felt overwhelming. None of the medical professionals I spoke to around that time had ever heard of my type of MD, and as a single woman in her forties, this further compounded my isolation and distress.
Spotlight on members of our community living with neuromuscular conditions: Simon Hogan
I am Simon Hogan, from Waterford. I was a firefighter and had to give it up due to my diagnosis. In the spring of 2009, I was required to get the hepatitis vaccine for work. I started getting ill a couple of months after the vaccine started, getting sinus problems I never had before. In December of 2009, I started getting chest pains, indigestion, and heart tests were carried out, but I got no answers.
MDI member, Andy shares his experiences on the benefits of swimming and some obstacles he faced.
I used to go swimming twice a week before Covid. When I went back after Covid, I wouldn’t have been able for twice a week at the start and so went just once a week. However, when I was ready to get back to going twice a week, as I need help in the swimming pool, I originally found it difficult to get Personal Assistance support back in place again for the second time, but I have it now.
Spotlight on members of our community living with neuromuscular conditions: Emer O’Sullivan
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Emer O’Sullivan for sharing her story and raising awareness about spinal muscular atrophy (SMA).
Spotlight on members of our community living with neuromuscular conditions: Oisín Quinn
As part of our members’ stories series, 13-year-old Oisín Quinn is delighted to share his story about his interest in music. Oisín lives with the neuromuscular condition, Charcot Marie Tooth type 1X (CMT1X).
Spotlight on members of our community living with neuromuscular conditions: Rose Maloney Quinn
As part of our members’ stories series, Rose Maloney Quinn is delighted to share her story about her career. Rose lives with the neuromuscular condition, Charcot Marie Tooth type 1X (CMT1X).
Spotlight on members of our community living with neuromuscular conditions: Annette Marie Murphy
As part of our members’ stories series, Annette Marie Murphy is delighted to share her story about her career.
Spotlight on members of our community living with neuromuscular conditions: Cormac O’Callaghan
As part of our members’ stories series, Cormac O’Callaghan is delighted to share his story about his involvement in cycling. I compete in paracycling at national and international levels. It helps me push myself and feel accomplished. I get to meet and compete with other great athletes from Ireland and around the world.
Spotlight on members of our community living with neuromuscular conditions: David Kennedy
As part of our members’ stories series, we are delighted to share David Kennedy story about the benefits he gains from keeping active through swimming.
Spotlight on members of our community living with neuromuscular conditions: Alex James Kennedy
As part of our members’ stories series, we are delighted to share Alex James Kennedy’s story about his music career.
Spotlight on members of our community living with neuromuscular conditions: Eoghan Curry
I lost the use of my right shoulder when I was 19. Then, when I was in my late twenties in 2009, I had issues with my left shoulder. I went to a shoulder specialist who referred me to a neurologist who ran all the tests. He brought me to the muscular dystrophy clinic in Beaumont in 2010 where I received a diagnosis there and then. Then I had more tests and received a genetic diagnosis in 2013. Facioscapulohumeral muscular dystrophy type 2 accounts for approximately 5 per cent of all cases of FSHD.
Spotlight on members of our community living with neuromuscular conditions: Maureen Pigott
As part of our members’ stories series, we are delighted to share Maureen’s Pigott’s story about running as a candidate in the local elections on 7 June. If you are a candidate living with a neuromuscular condition and who would like to share your personal experience of the campaign, please get in touch
Spotlight on Pompe disease
As International Pompe Day takes place every year in April, we want to raise awareness about this rare condition. We are unaware of anyone who is living with the condition in Ireland and so we are simply sharing information about the condition.
Spotlight on members of our community living with neuromuscular conditions: Brendan O’Connell
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Brendan for sharing his story and raising awareness about McArdle disease, which is also called Glycogen Storage Disease Type V (GSD V). The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition.