Irish Lung Fibrosis Association

Lobbying Organisation Irish Lung Fibrosis Association

Date published 21 Sep, 2016

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 May, 2016 to 31 Aug, 2016

Specific Details ILFA met with Minister Finian McGrath on 3 August to discuss spending a day with an IPF patient to help create awareness around IPF around IPF World Week taking place 17-25 September 2016. A pre budget was submitted to Minister McGrath, as well as transplantation documentation regarding transplantation issues affecting IPF patients and pre budget submission sent to Minister Donoghue, and Minister Harris.

Intended results 'A Day in The Life' was recorded with Minister McGrath and IPF patient Dermot King on 30 August. Videos were circulated through social media and some media attention was achieved to help raise awareness of IPF.

Name of person primarily responsible for lobbying on this activity Nicola Cassidy, Director of Irish Lung Fibrosis Association (ILFA).

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 (2-5)

ILFA emailed Minister McGrath to invite him to spend 1-2 hours with an IPF patient on a day to help raise awareness of IPF and also to generate positive publicity and awareness of IPF, a devastating lung condition.

Meeting (1)

ILFA met with Minister McGrath and agreed to ILFA's request to film 'A Day in The Life'.

Meeting (1)

Minister took part in the filming of 'A Day in The Life' on 30 August when spent a morning with Dermot King, IPF patient and took some photos also.

Submission (1)

ILFA submitted a pre budget submission and transplantation documentation regarding transplantation issues affecting IPF patients.

Email (2-5)

Liam Galvin wrote to the Irish MEP's during the campaign to get their signatures for the Written Declaration 26 on IPF from April 11th to July 11th both as a individual and representing ILFA and the EU-IPFF, contact being made by e-mail and social media.

Social Media (6-10)

Liam Galvin tweeted the Irish MEP's during the campaign to get their signatures for the Written Declaration 26 on IPF from April 11th to July 11th both as a individual and representing ILFA and the EU-IPFF, contact being made by e-mail and social media.

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.

Finan McGrath Minister of State (Department of Social Protection)

Paschal Donohoe Minister (Department of Transport, Tourism and Sport)

Simon Harris Minister of State (Department of Finance)

Brian Crowley MEP (European Parliament)

Brian Hayes MEP (European Parliament)

Deirdre Clune MEP (European Parliament)

Liadh Ní Riada MEP (European Parliament)

Luke "Ming" Flanagan MEP (European Parliament)

Lynn Boylan MEP (European Parliament)

Mairead McGuinness MEP (European Parliament)

Marian Harkin MEP (European Parliament)

Matt Carthy MEP (European Parliament)

Nessa Childers MEP (European Parliament)

Seán Kelly MEP (European Parliament)