SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Lobbying Organisation SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Date published 29 Apr, 2023

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2023 to 30 Apr, 2023

Specific Details Rare diseases and newborn screening of babies

Intended results To see spinal muscular atrophy added to the newborn screening heel prick test without further delay.

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? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (1)

Respectfully asked TD to consider raising Parliamentary question on the topic of SMA and newborn screening.

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.

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

Pauline Tully TD (Dáil Éireann, the Oireachtas)

Colm Burke TD (Dáil Éireann, the Oireachtas)