March 24: Santhera Pharmaceuticals Duchenne Drug Development Update – Vamorolone in Duchenne muscular dystrophy Parent Project Muscular Dystrophy and Santhera Pharmaceuticals are holding a webinar on Wednesday, March 24 at 1 PM (USA Eastern Daylight Time – 5pm Irish time). Santhera will provide an update to the community about the investigational therapy vamorolone, the use of steroids to treat Duchenne muscular […]
NAI report reveals critical gaps in neurology services
The Neurological Alliance of Ireland (NAI) has recently published a report “Resourcing of Neurology Services in Ireland Five Years on: 2015-2020” based on a survey of clinicians from 12 neurology centres across Ireland. It reveals critical gaps in neurology services. MDI is a member of the NAI. For more information, follow this link. https://www.nai.ie/go/news/15-3-2021-nai-report-reveals-critical-gaps-in-neurology-services
Inviting members’ views on Draft State Report on the UN Convention on the Rights of Persons with Disabilities
We are inviting MDI members to let us know what you think of the Draft Initial State Report on the Convention on the Rights of Persons with Disabilities. As a member organisation, MDI will feed into Disability Federation of Ireland’s (DFI) submission on the Draft Report. We want to include your views and experiences. In […]
MDI Zoom Support Groups
MDI Zoom Support Group for MDI Members with muscular dystrophy From 2pm – 4pm – beginning Tuesday 6th April (for 8 weeks) More details here: SupportGroupFlyer-MEMBERS MDI Zoom Support Group for Parents and Carers From 6.30pm – 8.30pm – beginning Thursday 8th April (for 8 weeks) More details here: SupportGroupFlyer-PARENTS
Update from HSE on COVID-19 vaccination programme
The vaccination programme continues to be rolled out nationwide, and more than 446,474 vaccines have been administered as of the 1st March 2021. As we move into next week, vaccination of Group 3 continues, with people aged 80 and over being invited for their vaccines by GPs. When this group is complete, we’ll move on to […]
St Patrick’s Zoom Quiz and Fun, 16th March at 6.30pm
ENTWINE survey on informal care
ENTWINE survey on informal care Would you like to take part in an EU-wide survey on informal care? If you are a caregiver or a care recipient, you can access the anonymous survey on this link https://entwine-icohort.eu/. Find out more about the project here https://entwine-itn.eu/.
Roche pharmaceuticals receives positive CHMP opinion for Evrysdi, the first at home treatment for SMA
Roche receives positive CHMP opinion for Evrysdi, the first and only at home spinal muscular atrophy (SMA) treatment with proven effectiveness in adults, children and infants two months and older. Roche pharmaceuticals has recently announced that the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) has recommended the approval of Evrysdi™ […]
Sarepta Therapeutics announces treatment for DMD
Sarepta Therapeutics announces FDA (US) Approval of AMONDYS 45™ (casimersen) injection for the treatment of Duchenne muscular dystrophy (DMD) in patients amenable to skipping Exon 45 The Food and Drugs Administration (FDA) in the USA has granted accelerated approval to AMONDYS 45™ (casimersen). AMONDYS 45™ is engineered to treat patients with DMD who have genetic […]
Pfizer’s Phase 3 gene therapy trial for DMD
First participant dosed in Pfizer’s Phase 3 gene therapy trial for DMD Pfizer has announced that the first participant has been dosed in the Phase 3 CIFFREO clinical trial. The CIFFREO study is testing the effectiveness and safety of the potential therapy drug PF-06939926 for the treatment of Duchenne muscular dystrophy (DMD). This is the […]
