SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Lobbying Organisation SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Date published 29 Aug, 2025

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2025 to 31 Aug, 2025

Specific Details SMA and adult access to treatment

Intended results Individuals with SMA who were <18yo when the medicine was approved continue to receive treatment into adulthood. However, their peers who were over 18 are excluded from treatment. This injustice continues, With a small number of adults excluded from treatment. We are campaigning to see that these adults are not discriminated from treatment simply according to age.

Name of person primarily responsible for lobbying on this activity Jonathan W O'Grady, SMA Ireland and Muscular Dystrophy Ireland

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? Yes

What is the directive you gave to the grassroots campaigners? We asked members of SMA Ireland and muscular dystrophy Ireland to contact their public representative regarding a presentation we were giving in the AV room at Munster house.

Was this lobbying done on behalf of a client? No

Mass communications

Email All Oireachtas Members We advised members that SMA Ireland and muscular dystrophy Ireland was giving a presentation in the AV room at Leinster House and we asked for their support by attending.

Lobbying activity

No lobbying activity recorded during this return period on this specific Subject Matter Area.

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.

Colm Burke TD (Dáil Éireann, the Oireachtas)

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

Hildegarde Naughton TD (Dáil Éireann, the Oireachtas)

Barry Ward TD (Dáil Éireann, the Oireachtas)

Paul Murphy TD (Dáil Éireann, the Oireachtas)