Governance

PSPAssociation lreland is a company limited by guarantee operating as PSPA lreland
Board & Management

PSPAssociation lreland CLG are governed by a board of voluntary trustees none of which
receive payment for services to the charity. The board evaluates and monitors PSPAssociation
lreland CLG to ensure the charity continues to develop and improve service and procedures in
line with its legal and statutory obligations. lts role is one of strategic oversight and direction,
internally and externally monitored. The Board reviews and approves the actions of the charity ,
approves and implements strategies and plans,oversees subcommittees and plans of action
while upholding the intrinsic values and mission of the PSPAssociation lreland CLG.
The Operations Manager has responsibility for the overall management of the service and
reports directly to the Board.
The management committee is there to manage the day to day running of the business in line
with the mission and vision of PSPAssociation lreland CLG.. The management committee is
responsible for continuous quality improvement, maintaining best practice and statutory
guidelines.
The members are an important part of our organisation and their input is integrated into the
planning and provision of services provided by PSPAssociation lreland CLG.

Board
Chairperson: Caroline Dooley Martyn
Secretary Barra O’ Briain
Treasurer: Liam Mulready

Corporate lnformation

Name: PSPAssociation lreland CLG
Operation Name : PSPA lreland
Address: Carmichael House,4, North Brunswick Dublin 7 D07RHA8
Telephone: 0873821377 email :info@pspaireland.ie

PSPAssociation lreland CLG is
o registered with the Companies Office – Company number:551954
o registered with the Charities Regulator – RCN:20102210
o registered with”the Revenue Commissioners – CHY:22406

Codes of Practice

o Companies Act 2014
o Charities Act 2009
o Guidelines for Charitable Organisations Fundraising from the Public
o Protected Disclosure Act
o Freedom of information Act 2014
o Others will be implemented where applicable

PSPAssociation lreland CLG is working to comply with to the Charities Governance Code
Financial Reporting
PSPAssociation lreland CLG is a voluntary charitable organisation governed by a Board of
Directors. The charity is committed to openness and transparency in its actions and publishes
its Financial information

Annual Report 2020

Financial year 2020
Financial year 2019
Financial year 2018
Financial year 2017
Financial year 2016

Sub-committees
PSPAssociation lreland’s sub-committees are chaired by a board member who reports on the
work of the subcommittee at the Board meetings . The terms of reference of the subcommittee
are agreed by the board . The members are approved by the board and the subcommittees are
subject to annual review.

PSPAssocaition Ireland has two sub-committees
Finance sub- committee
Fundraising sub- committee
Statement of Guiding Principles for Fundraising

PSPAssociation lreland CLG operating as PSPA lreland has formally committed to comply with
the statement of guiding Principles for Fundraising.
Fundraising compliance statement
Donor Charter
Feedback & Complaints Policy
Fundraising Resolution

PSPAssociation lreland CLG is a registered charity supported by donations from the public and
donors. We rely on the goodwill and generosity of our supporters to fund our work. Every penny
counts and goes back into providing our services.
Donations made by the lrish taxpayer to PSPAssociation lreland CLG are eligible for additional
tax relief enabling the charity to benefit from additional funds. The donor is required to fill a
CHY3 form


Policies & Procedures
We have a number of policies in place to enable us to operate professionally and to comply with
our statutory obligations including the following
Freedom of lnformation Policy
Safeguarding Policy
Children & Vulnerable Persons Act2012


Memberships:
PSPA UK https://www.pspassociation.org
CurePSP https://www.pso.org
PROMOTUS http://www.promotus.org
Neurological Alliance of lreland (NAl) http://www.nai.ie
lrish Patient Platform for Science & lndustry (lPPOS|) http://www.ioposi.ie
Disability Federation of lreland (DFl) http://www.dfi.ie
Northern lreland Rare Disease Platform (NIRDP) http://www.nirdp.org.uk
Rare Disease lreland (RDl) http://www.rdi.ie
EURORDIS http://www.eurordis.org
Carmichael http://www.carmichaelireland.ie
The Wheel http://www.wheel.ie