In Profile – MDI Member, Thomas Byrne, Shares His Story of Living With the Neuromuscular Condition, Charcot-Marie-Tooth
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.
Reimbursement Approval of Evrysdi® for the Treatment of Spinal Muscular Atrophy
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.
Limb Girdle Muscular Dystrophy (Lgmd) Community Gathering
Muscular Dystrophy Ireland (MDI) is pleased to invite you to our LIMB GIRDLE MUSCULAR DYSTROPHY (LGMD) COMMUNITY GATHERING.