Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying Organisation Muscular Dystrophy Society of Ireland GLC

Date published 17 Sep, 2026

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May. 2026 to 31 Aug. 2026

Specific Details Prioritise and support an expedited review and reimbursement process for Skyclarys (omaveloxolone), a recently approved treatment for Friedreich’s ataxia.

Intended results To secure the timely assessment, pricing and reimbursement of Skyclarys (omaveloxolone) by the HSE, with a view to enabling equitable access for eligible people living with Friedreich’s ataxia in Ireland as soon as possible following completion of the relevant review and decision-making processes.

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.

Letter (1)

Joint letter with Friedreich's Ataxia Research Alliance (FARA) Ireland to the Minister for Health on 21 May asking for her Department to prioritise and support an expedited review and reimbursement process for Skyclarys, (omaveloxolone) for for eligible people living with Friedreich’s ataxia.

Letter (1)

Joint letter from Friedreich’s Ataxia Research Alliance (FARA) Ireland Ireland and MDI to Joint Oireachtas Committee on Health, asking that it uses its platform to: Advocate for prioritisation of the assessment and reimbursement process for Skyclarys; Engage with the relevant stakeholders, including the HSE and NCPE, to ensure that the urgency of this matter is recognised; Highlight the unmet need faced by individuals living with Friedreich’s ataxia in 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.

Jennifer Carroll MacNeill Minister (Department of Health)

Pádraig Rice TD (Dáil Éireann, the Oireachtas)

Colm Burke TD (Dáil Éireann, the Oireachtas)

Michael Cahill TD (Dáil Éireann, the Oireachtas)

Sorca Clarke TD (Dáil Éireann, the Oireachtas)

David Cullinane TD (Dáil Éireann, the Oireachtas)

Martin Daly TD (Dáil Éireann, the Oireachtas)

Pádraig O'Sullivan TD (Dáil Éireann, the Oireachtas)

Peter Roche TD (Dáil Éireann, the Oireachtas)

Marie Sherlock TD (Dáil Éireann, the Oireachtas)