Highlights Of Our Events For Young People And Families Aug - Dec 2023
Trip to Croke Park and Skyline Tour – August
Photo: Evan Moran, Yasin Machigov, Yakub Machigov, Olivia Lynch, Una Sadler, Sinéad Glennon, Teddy, Cathal Briscoe, Niamh Handy, Mollie Heffernan, Johnny Heffernan, Cathriona Heffernan, Connor Heffernan, Katie Heffernan, Layla Flaherty, Susan Dempsey, Charlie Dempsey, Jake O’Dwyer, Damian Farrell, Kayden Burke, Amanda Gurren, Alex Larkin, Fionn O’Reilly, Danielle O’Dwyer, Kian O’Reilly.
Not for the faint hearted, but we put our fears behind us, as we traveled up to the roof of Croke Park to take part in Skyline tour. It was back down to earth again with a tour of the stadium, dressing rooms and the pitch itself.
Youth breaks at MDI House – August
Photo L to R: Amanda Gurren, Marykate Morrisey, Linda Corcoran, Aisling Geary, Evan Moran, Tommy Thornton, Sinéad Glennon.
We had four young members join us to stay at MDI’s Home from Home Apartment in Dublin and enjoy a week full of activities that included a photography workshop, cookery, a trip to Dublin Zoo and Dublinia Viking Museum, bowling, virtual reality gaming and of course, sampling some of Dublin's lovely restaurants!
MDI Family Day at Dublin Zoo - September
Photo: the O’Hara Family left to right, Shannon, Eric, Caden and Darroch.
We had a fantastic turn out on again this year at MDI’s National Family Day at Dublin Zoo in September, with 40 attending along with their families from all across the county. The event offered the chance to reconnect and, in some instances, meet other families for the first time.
Having a blast with MDI Science Programme
Photo: two mad scientists, Sam Gowing and Odhran Quirke, causing mischief trying to blow up the CEO’s office!
This autumn, in conjunction with Junior Einsteins Science Club, we introduced our science programme for younger members. We will be continuing this programme with further workshops on 27 January and 15 February. If you are interested, please contact Sinéad at sinead@mdi.ie or on 0863899285.
MDI progress in connecting with people attending neuromuscular clinics
Photo: Sinéad O’Brien, MDI Clinic Liaison Officer.
We are so pleased to let you know that our new Clinic Liaison Service has been developing really well and has meant that a friendly face from MDI has been there for people attending paediatric and adult neuromuscular clinics, with an active presence so far in Cork and Dublin across eight sites. Since March this year, it has resulted in over 100 new families who are now linked in with supports available from us.
Condition-specific community gatherings
Limb Girdle muscular dystrophy community gathering, at MDI, Dublin, 4 October. Front row, L to R, members Nicola Whelan and Robert Vaughan. Back row, L to R, Shane O’Byrne, MDI Family Support Worker and Dympna Mulroy, MDI Research Officer.
The programme included:
• The importance of having a voice and feeling listened to, with Marianne Dwyer, counsellor and psychotherapist
• Living with LGMD, with Nicola Whelan, MDI member
• Not living to wait, and not waiting to live, my journey with muscular dystrophy, with Pat Moeschen, Parent Project Muscular Dystrophy, USA.
At the Limb Girdle muscular dystrophy community gathering, at MDI, Dublin, on 4 October; L to R, members Helena Fogarty, Vincent Kelly, Grazia Daversa.
At the Charcot-Marie-Tooth community gathering at MDI, Dublin on 18 October.
L to R: Sarah Attridge, member: Rosemary Maloney Quinn, member; Elizabeth Smith, member; Mary Muldoon, friend; Maureen Bradley, member; Dympna Mulroy, MDI Research Officer; Fabiana Traini, Research Intern/PhD candidate, Ulysses Neuroscience; Karen Lew, MDI Programme and Community Development Worker; Liz Attridge, member and Sarah Greaney, member.
The programme included:
· Introduction to CMT Exercise Video Series developed by Rebekah Knight, specialist physiotherapist, who also lives with CMT
· Living well with CMT with Maureen Bradley, MDI member and retired physiotherapist
· Presentation on study involving skin biopsy and blood sampling of people with CMT in Ireland for biomarker analysis, with Carolina De Pasquale, Ulysses Neuroscience.
At the Myotonic dystrophy community gathering at MDI, Dublin on 23 October; L to R: Elizabeth Mc Ternan, member; Euan Cumming, Myotonic Dystrophy Support Group (UK); Kathy Le Brasse, member; Michael Walker, Myotonic Dystrophy Support Group (UK); Clodagh King, member; Anne King, member; Dympna Mulroy, MDI Research Officer; Donal McTernan, member.
The programme included:
· Modern treatments for myotonic dystrophy, with Dr Chris Turner, from the National Hospital for Neurology and Neurosurgery, Queen Square, London
· Reflections on living with myotonic dystrophy and on having a daughter with myotonic dystrophy, with Frank Handy, MDI member
· The work of Myotonic Dystrophy Support Group (UK), with Michael Walker.
At the Duchenne muscular dystrophy community gathering at MDI, Dublin on 18 November; L to R Hazel Bridcut, Tania McAuley, Siobhán Briscoe, Karen Thompson, Donna Moran and Sandra Peacock.
The programme included:
· Transition to secondary school – promoting independence and planning for success, with Dr Laura Gallagher, Senior Clinical Psychologist
· Conor’s story – how has he gotten to where he is today, with MDI member Conor McAuley, content creator and speaker
· Supporting transitions to adulthood – occupational therapy research project, with Dr Michelle Spirtos and Siobhán O’Shea, occupational therapists, followed by discussions
· Making international connections – Adith Thummalapalli, Vice-president of Parent Project Muscular Dystrophy’s (USA) adult advisory committee.
We were delighted to hold an under-18s youth club at MDI for younger family members at the same time.
At the Duchenne muscular dystrophy community gathering at MDI, Dublin on 18 November; L to R Jamie Thompson and Thomas Briscoe.