Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying Organisation Muscular Dystrophy Society of Ireland GLC

Date published 13 Jan, 2026

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2025 to 31 Dec, 2025

Specific Details Campaign for equal access to treatments for SMA adults

Intended results Equal access to life-saving treatments for all adults with spinal muscular atrophy (SMA) in Ireland

Name of person primarily responsible for lobbying on this activity Ms Bindu Nair

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)

A brief meeting took place at MDI’s National Conference on 7 December 2025 between Minister MacNeill, Bindu Nair (MDI Chairperson) and Emer O’Sullivan (MDI Board Member). The Minister had attended the conference to address attendees on a range of issues of interest to them.

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)