Muscular Dystrophy Society of Ireland GLC

Politician(s) lobbied: Emer Higgins (Minister of State), Department of Children, Equality, Disability, Integration and Youth

Intent: Access to: 1. Risdiplam for adults with SMA; 2 Givinostat for children with Duchenne muscular dystrophy; 3. Skyclarys for people living with Friedreich's ataxia.

Methods: Email

Politician(s) lobbied: Tom Clonan (Senator), Seanad; Nicole Ryan (Senator), Seanad; Manus Boyle (Senator), Seanad; Peter Roche (TD), Dáil Éireann, the Oireachtas; Martin Daly (TD), Dáil Éireann, the Oireachtas; Sorca Clarke (TD), Dáil Éireann, the Oireachtas; Teresa Costello (Senator), Seanad; Maria Byrne (Senator), Seanad; Marie Sherlock (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Pádraig Rice (TD), Dáil Éireann, the Oireachtas

Intent: Address ongoing challenges and inequities in the health system re rare disease and ensure that Ireland's approach to rare disease policy, from newborn screening to medicine reimbursement is guided by transparency, timeliness, and compassion.

Methods: Submission

Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health

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

Methods: Meeting

Politician(s) lobbied: Unknown

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

Methods: Event / ReceptionEmailMeeting

Politician(s) lobbied: Unknown

Intent: Timely assessment of Givinostat for boys living with Duchenne muscular dystrophy

Methods: Event / ReceptionMeetingEmail

Politician(s) lobbied: Bernard Gloster (Chief Executive Officer), Health Service Executive

Intent: Ensuring accessible ambulance transport would alleviate significant burdens for families already navigating the complexities of caring for a child with high medical needs. It would also ensure that no child is left without the critical treatment and care they need due to logistical barriers.

Methods: Email

Politician(s) lobbied: Unknown

Intent: Unknown

Methods: Unknown

Politician(s) lobbied: Aengus Ó Snodaigh (TD), Dáil Éireann, the Oireachtas; Alan Dillon (TD), Dáil Éireann, the Oireachtas; Alan Kelly (TD), Dáil Éireann, the Oireachtas; Aodhán Ó Ríordáin (TD), Dáil Éireann, the Oireachtas; Bernard Durkan (TD), Dáil Éireann, the Oireachtas; Brendan Howlin (TD), Dáil Éireann, the Oireachtas; Brian Leddin (TD), Dáil Éireann, the Oireachtas; Bríd Smith (TD), Dáil Éireann, the Oireachtas; Cathal Berry (TD), Dáil Éireann, the Oireachtas; Aindrias Moynihan (TD), Dáil Éireann, the Oireachtas; Alan Farrell (TD), Dáil Éireann, the Oireachtas; Anne Rabbitte (TD), Dáil Éireann, the Oireachtas; Barry Cowen (TD), Dáil Éireann, the Oireachtas; Brendan Griffin (TD), Dáil Éireann, the Oireachtas; Brendan Smith (TD), Dáil Éireann, the Oireachtas; Brian Stanley (TD), Dáil Éireann, the Oireachtas; Carol Nolan (TD), Dáil Éireann, the Oireachtas; Carol Nolan (TD), Dáil Éireann, the Oireachtas; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; Catherine Connolly (TD), Dáil Éireann, the Oireachtas; Catherine Murphy (TD), Dáil Éireann, the Oireachtas; Charlie McConalogue (TD), Dáil Éireann, the Oireachtas; Christopher O'Sullivan (TD), Dáil Éireann, the Oireachtas; Ciaran Cannon (TD), Dáil Éireann, the Oireachtas; Colm Brophy (TD), Dáil Éireann, the Oireachtas; Cormac Devlin (TD), Dáil Éireann, the Oireachtas; Danny Healy-Rae (TD), Dáil Éireann, the Oireachtas; Darragh O'Brien (TD), Dáil Éireann, the Oireachtas; Darragh O'Brien (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Catherine Martin (TD), Dáil Éireann, the Oireachtas; Charles Flanagan (TD), Dáil Éireann, the Oireachtas; Chris Andrews (TD), Dáil Éireann, the Oireachtas; Cian O'Callaghan (TD), Dáil Éireann, the Oireachtas; Claire Kerrane (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Damien English (TD), Dáil Éireann, the Oireachtas; Dara Calleary (TD), Dáil Éireann, the Oireachtas; Darren O'Rourke (TD), Dáil Éireann, the Oireachtas; David Stanton (TD), Dáil Éireann, the Oireachtas; Denis Naughten (TD), Dáil Éireann, the Oireachtas; Dessie Ellis (TD), Dáil Éireann, the Oireachtas; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Eamon Ryan (TD), Dáil Éireann, the Oireachtas; Eoin Ó Broin (TD), Dáil Éireann, the Oireachtas; Francis Noel Duffy (TD), Dáil Éireann, the Oireachtas; Gary Gannon (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Helen McEntee (TD), Dáil Éireann, the Oireachtas; Denise Mitchell (TD), Dáil Éireann, the Oireachtas; Donnchadh Ó Laoghaire (TD), Dáil Éireann, the Oireachtas; Emer Higgins (TD), Dáil Éireann, the Oireachtas; Fergus O'Dowd (TD), Dáil Éireann, the Oireachtas; Frank Feighan (TD), Dáil Éireann, the Oireachtas; Ged Nash (TD), Dáil Éireann, the Oireachtas; Imelda Munster (TD), Dáil Éireann, the Oireachtas; Hildegarde Naughton (TD), Dáil Éireann, the Oireachtas; Heather Humphreys (TD), Dáil Éireann, the Oireachtas; Willie O'Dea (TD), Dáil Éireann, the Oireachtas; Violet Anne Wynne (TD), Dáil Éireann, the Oireachtas; Verona Murphy (TD), Dáil Éireann, the Oireachtas; Thomas Pringle (TD), Dáil Éireann, the Oireachtas; Thomas Gould (TD), Dáil Éireann, the Oireachtas; Thomas Byrne (TD), Dáil Éireann, the Oireachtas; Steven Matthews (TD), Dáil Éireann, the Oireachtas; Stephen Donnelly (TD), Dáil Éireann, the Oireachtas; Sorca Clarke (TD), Dáil Éireann, the Oireachtas; Simon Harris (TD), Dáil Éireann, the Oireachtas; Simon Coveney (TD), Dáil Éireann, the Oireachtas; Seán Sherlock (TD), Dáil Éireann, the Oireachtas; Seán Ó Fearghaíl (TD), Dáil Éireann, the Oireachtas; Seán Haughey (TD), Dáil Éireann, the Oireachtas; Seán Fleming (TD), Dáil Éireann, the Oireachtas; Seán Crowe (TD), Dáil Éireann, the Oireachtas; Seán Canney (TD), Dáil Éireann, the Oireachtas; Ruairí Ó Murchú (TD), Dáil Éireann, the Oireachtas; Rose Conway-Walsh (TD), Dáil Éireann, the Oireachtas; Róisín Shortall (TD), Dáil Éireann, the Oireachtas; Roderic O'Gorman (TD), Dáil Éireann, the Oireachtas; Robert Troy (TD), Dáil Éireann, the Oireachtas; Richard O'Donoghue (TD), Dáil Éireann, the Oireachtas; Richard Bruton (TD), Dáil Éireann, the Oireachtas; Richard Boyd Barrett (TD), Dáil Éireann, the Oireachtas; Réada Cronin (TD), Dáil Éireann, the Oireachtas; Peter Fitzpatrick (TD), Dáil Éireann, the Oireachtas; Peter Burke (TD), Dáil Éireann, the Oireachtas; Pearse Doherty (TD), Dáil Éireann, the Oireachtas; Peadar Tóibín (TD), Dáil Éireann, the Oireachtas; Pauline Tully (TD), Dáil Éireann, the Oireachtas; Paul Murphy (TD), Dáil Éireann, the Oireachtas; Paul McAuliffe (TD), Dáil Éireann, the Oireachtas; Paul Kehoe (TD), Dáil Éireann, the Oireachtas; Paul Donnelly (TD), Dáil Éireann, the Oireachtas; Patrick O'Donovan (TD), Dáil Éireann, the Oireachtas; Patrick Costello (TD), Dáil Éireann, the Oireachtas; Patricia Ryan (TD), Dáil Éireann, the Oireachtas; Pat Buckley (TD), Dáil Éireann, the Oireachtas; Paschal Donohoe (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Padráig Mac Lochlainn (TD), Dáil Éireann, the Oireachtas; Pa Daly (TD), Dáil Éireann, the Oireachtas; Ossian Smyth (TD), Dáil Éireann, the Oireachtas; Norma Foley (TD), Dáil Éireann, the Oireachtas; Noel Grealish (TD), Dáil Éireann, the Oireachtas; Niamh Smyth (TD), Dáil Éireann, the Oireachtas; Niall Collins (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Neale Richmond (TD), Dáil Éireann, the Oireachtas; Mick Barry (TD), Dáil Éireann, the Oireachtas; Micheál Martin (Taoiseach), Dáil Éireann, the Oireachtas; Michael Ring (TD), Dáil Éireann, the Oireachtas; Michael Moynihan (TD), Dáil Éireann, the Oireachtas; Michael McNamara (TD), Dáil Éireann, the Oireachtas; Michael McGrath (TD), Dáil Éireann, the Oireachtas; Michael Lowry (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas; Michael Fitzmaurice (TD), Dáil Éireann, the Oireachtas; Michael Creed (TD), Dáil Éireann, the Oireachtas; Michael Collins (TD), Dáil Éireann, the Oireachtas; Maurice Quinlivan (TD), Dáil Éireann, the Oireachtas; Maurice Quinlivan (TD), Dáil Éireann, the Oireachtas; Mattie McGrath (TD), Dáil Éireann, the Oireachtas; Matt Shanahan (TD), Dáil Éireann, the Oireachtas; Matt Carthy (TD), Dáil Éireann, the Oireachtas; Mary Lou McDonald (TD), Dáil Éireann, the Oireachtas; Mary Butler (TD), Dáil Éireann, the Oireachtas; Martin Kenny (TD), Dáil Éireann, the Oireachtas; Martin Heydon (TD), Dáil Éireann, the Oireachtas; Martin Browne (TD), Dáil Éireann, the Oireachtas; Mark Ward (TD), Dáil Éireann, the Oireachtas; Marian Harkin (TD), Dáil Éireann, the Oireachtas; Marc Ó Cathasaigh (TD), Dáil Éireann, the Oireachtas; Marc MacSharry (TD), Dáil Éireann, the Oireachtas; Malcolm Noonan (TD), Dáil Éireann, the Oireachtas; Mairéad Farrell (TD), Dáil Éireann, the Oireachtas; Louise O'Reilly (TD), Dáil Éireann, the Oireachtas; Leo Varadkar (TD), Dáil Éireann, the Oireachtas; Kieran O'Donnell (TD), Dáil Éireann, the Oireachtas; Kathleen Funchion (TD), Dáil Éireann, the Oireachtas; Josepha Madigan (TD), Dáil Éireann, the Oireachtas; Johnny Mythen (TD), Dáil Éireann, the Oireachtas; Johnny Guirke (TD), Dáil Éireann, the Oireachtas; John Paul Phelan (TD), Dáil Éireann, the Oireachtas; John McGuinness (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; John Brady (TD), Dáil Éireann, the Oireachtas; Joe O'Brien (TD), Dáil Éireann, the Oireachtas; Joe McHugh (TD), Dáil Éireann, the Oireachtas; Joe Flaherty (TD), Dáil Éireann, the Oireachtas; Joe Carey (TD), Dáil Éireann, the Oireachtas; Joan Collins (TD), Dáil Éireann, the Oireachtas; Jim O'Callaghan (TD), Dáil Éireann, the Oireachtas; Jennifer Whitmore (TD), Dáil Éireann, the Oireachtas; Jennifer Murnane O'Connor (TD), Dáil Éireann, the Oireachtas; Jennifer Carroll MacNeill (TD), Dáil Éireann, the Oireachtas; Jan O'Sullivan (TD), Dáil Éireann, the Oireachtas; James O'Connor (TD), Dáil Éireann, the Oireachtas; James Lawless (TD), Dáil Éireann, the Oireachtas; James Browne (TD), Dáil Éireann, the Oireachtas; Jackie Cahill (TD), Dáil Éireann, the Oireachtas; Jack Chambers (TD), Dáil Éireann, the Oireachtas; Ivana Bacik (TD), Dáil Éireann, the Oireachtas; Imelda Munster (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Hildegarde Naughton (TD), Dáil Éireann, the Oireachtas; Helen McEntee (TD), Dáil Éireann, the Oireachtas; Heather Humphreys (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; Ged Nash (TD), Dáil Éireann, the Oireachtas; Gary Gannon (TD), Dáil Éireann, the Oireachtas; Aidan Davitt (Senator), Seanad; Aisling Dolan (Senator), Seanad; Alice-Mary Higgins (Senator), Seanad; Alice-Mary Higgins (Senator), Seanad; Annie Hoey (Senator), Seanad; Barry Ward (Senator), Seanad; Catherine Ardagh (Senator), Seanad; David Norris (Senator), Seanad; Denis O'Donovan (Senator), Seanad; Diarmuid Wilson (Senator), Seanad; Eileen Flynn (Senator), Seanad; Emer Currie (Senator), Seanad; Erin McGreehan (Senator), Seanad; Eugene Murphy (Senator), Seanad; Fintan Warfield (Senator), Seanad; Fiona O'Loughlin (Senator), Seanad; Frances Black (Senator), Seanad; Garret Ahearn (Senator), Seanad; Garrett Ahern (Senator), Seanad; Gerard Craughwell (Senator), Seanad; Gerry Horkan (Senator), Seanad; Jerry Buttimer (Senator), Seanad; Joe O'Reilly (Senator), Seanad; John Cummins (Senator), Seanad; John McGahon (Senator), Seanad; Lisa Chambers (Senator), Seanad; Lorraine Clifford-Lee (Senator), Seanad; Lynn Boylan (Senator), Seanad; Lynn Ruane (Senator), Seanad; Mal O'Hara (Senator), Seanad; Malcolm Byrne (Senator), Seanad; Maria Byrne (Senator), Seanad; Marie Sherlock (Senator), Seanad; Mark Daly (Senator), Seanad; Mark Wall (Senator), Seanad; Martin Conway (Senator), Seanad; Mary Fitzpatrick (Senator), Seanad; Mary Seery Kearney (Senator), Seanad; Michael McDowell (Senator), Seanad; Micheál Carrigy (Senator), Seanad; Ned O'Sullivan (Senator), Seanad; Niall Blaney (Senator), Seanad; Niall Ó Donnghaile (Senator), Seanad; Niall Ó Donnghaile (Senator), Seanad; Ollie Crowe (Senator), Seanad; Paddy Burke (Senator), Seanad; Pat Casey (Senator), Seanad; Paul Daly (Senator), Seanad; Paul Gavan (Senator), Seanad; Pauline O'Reilly (Senator), Seanad; Pippa Hackett (Senator), Seanad; Rebecca Moynihan (Senator), Seanad; Regina Doherty (Senator), Seanad; Robbie Gallagher (Senator), Seanad; Róisín Garvey (Senator), Seanad; Rónán Mullen (Senator), Seanad; Seán Kyne (Senator), Seanad; Shane Cassells (Senator), Seanad; Sharon Keogan (Senator), Seanad; Tim Lombard (Senator), Seanad; Timmy Dooley (Senator), Seanad; Tom Clonan (Senator), Seanad; Victor Boyhan (Senator), Seanad; Vincent P Martin (Senator), Seanad

Intent: Expansion of the programme to increase the number of conditions screened for, to be in line with the European average of 18 conditions. In 2022, the condition, ADIA-SCID was added to the NBS programme, however this hasn’t been fully implemented yet. In November 2023, Spinal Muscular Atrophy (SMA) was endorsed to be included in the NBS programme with a commitment that screening for SMA would start before the end of 2024.

Methods: Meeting

Politician(s) lobbied: Marc MacSharry (TD), Dáil Éireann, the Oireachtas

Intent: Seek Government policy position on people living with Muscular Dystrophy disorder as it applies to wheelchair users in Higher Education Institutions as well as updated government statistics on same.

Methods: Email

Politician(s) lobbied: Norma Foley (Minister), Department of Education

Intent: Barriers addressed re affordable accessible transport for students with disabilities. ::Barriers addressed re affordable accessible accommodation for students with disabilities.::Barriers addressed re persistent physical access issues at colleges and universities.::Barriers addressed re current requirement of students with disabilities to reapply for state supports at each stage of education. Transitional programme for students with a physical disability introduced so that students receive state supports that follow the person on their educational journey, rather than supports being fragmented as they are currently.

Methods: Event / ReceptionSocial Media