Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying Organisation Muscular Dystrophy Society of Ireland GLC

Date published 21 May, 2026

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan. 2026 to 30 Apr. 2026

Specific Details Reimbursement of treatments for muscular dystrophy and related neuromuscular conditions

Intended results Access to: 1. Risdiplam for adults with SMA; 2 Givinostat for children with Duchenne muscular dystrophy; 3. Skyclarys for people living with Friedreich's ataxia.

Name of person primarily responsible for lobbying on this activity Alan Breathnach

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (1)

Requesting a meeting with Emer Higgins, the Minister of State attending cabinet with responsibility for Disability, to discuss the reimbursement of treatments for muscular dystrophy and related neuromuscular conditions, and other matters related to the wellbeing of members of Muscular Dystrophy Ireland.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Emer Higgins Minister of State (Department of Children, Equality, Disability, Integration and Youth)