SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Lobbying Organisation SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Date published 07 Dec, 2024

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2024 to 31 Dec, 2024

Specific Details SMA and adult access to treatment

Intended results Expand access to drugs currently available to under 18's Suffering from spinal muscular atrophy to the small number of adults who have thus far been excluded.

Name of person primarily responsible for lobbying on this activity Jonathan W O'Grady

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? Provided members of the SMA Ireland community with a draft letter and email addresses to write to their public representatives highlighting this injustice.

Was this lobbying done on behalf of a client? No

Mass communications

Email All Oireachtas Members We wrote to all election candidates in advance of the 2024 general election.

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (1)

SMA Ireland wrote to every election candidate by email. SMA Ireland members took it upon themselves to write to Election candidates in their constituency.

Designated public officials lobbied

There were no DPOs directly lobbied during this return period on this specific Subject Matter Area.