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 Review Long-Term Illness Scheme

Intended results Review criteria for Long Term Illness Scheme to include Amyloidosis and the neuropathies such as Charcot Marie Tooth and spinal muscular atrophy (SMA), with a specific timeline and commitment in place.

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.

Meeting (1)

MDI CEO met with the Minister on 16 July, at which he advocated for Review criteria for Long Term Illness Scheme to include amyloidosis and the neuropathies such as Charcot Marie Tooth and spinal muscular atrophy (SMA), with a specific timeline and commitment in place. He highlighted the inequities in the Long-Term Illness Scheme, noting that people living with such conditions remain excluded despite comparable levels of disability and support needs to those living with eligible conditions.

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)