GOVERNANCE HANDBOOK NATIONAL ASSOCIATION FOR SPINA BIFIDA & HYDROCEPHALUS IRELAND COMPANY LIMITED BY GUARANTEE ( SBHI ) [ ] 2018

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1 GOVERNANCE HANDBOOK NATIONAL ASSOCIATION FOR SPINA BIFIDA & HYDROCEPHALUS IRELAND COMPANY LIMITED BY GUARANTEE ( SBHI ) [ ] 2018

2 GOVERNANCE HANDBOOK OF NATIONAL ASSOCIATION FOR SPINA BIFIDA & HYDROCEPHALUS IRELAND COMPANY LIMITED BY GUARANTEE ( SBHI ) 1. DEFINITIONS T/A SPINA BIFIDA HYDROCEPHALUS IRELAND 1.1 The defined terms in the Constitution of the Company shall apply unless otherwise defined herein 1.2 In this Governance Handbook the following definitions shall apply unless context so requires: Branch means a branch established by the Board in accordance with this Governance Handbook. Constitution means the constitution consisting of the Memorandum and Articles of Association as is in effect in relation to the Company from time to time. Participants means Voting Members and Non-Voting Members 2. ADOPTION DATE 2.1 This Governance Handbook are adopted as of [ ] 2018 and the provisions hereof were notified to Participants as having effect from [ ] OFFICE The administrative office of SBHI shall be at Old Nangor Road, Clondalkin, Dublin 22 or at such other address within the State as the Board shall from time to time decide and provide for in an update to this Governance Handbook. 4. STATUS OF THIS GOVERNANCE HANDBOOK Pursuant to Article [3.1] of the Articles of Association of SBHI (the Articles ), this Governance Handbook is deemed necessary for the proper conduct and management of the affairs of SBHI, provided always that no provision hereof shall be inconsistent with or shall affect or repeal anything contained in the Constitution of SBHI. In the event that any provision hereof and any Article or the Act conflict, the relevant Article or, where relevant, the Act, shall prevail. 5. PARTICIPANTS 5.1 The Company is a legal body which also acts as a charitable entity. As such, the Board considers it appropriate to have persons participating in the activities carried on by the Company that are not capable of having legal rights in relation to the Company. 5.2 Voting Members are those persons that may be part of the legal activities of the Company and to which a membership interest is provided in the Company is attributed on their being admitted as a member pursuant to the Constitution. Voting Members are a natural person with spina bifida and/or hydrocephalus or a family member of same, or a natural or legal

3 person that is a member of a Branch, a supporter or volunteer who supports the work of the Company. In each case, every Voting Member must subscribe to the rules and Governance Handbook of the Company and agree to be listed on the Company data-base. Natural persons must be over the age of 18 (or emancipated). 5.3 Non-Voting Members are those participants who do not have a legal participation right in the Company but who have the right to participation in and receipt of the benefits of the activities and support of the Company. Non-Voting Members are natural persons that could otherwise be Voting Members but who have not attained the age of 18 years and may become Voting Members upon attaining the age of 18 years or other persons, whether natural or legal, which may utilise the services of the Company but do not want to otherwise become a Voting Member. 5.4 For each year ended 31 December, the National Resource Centre of SBHI (the NRC ) shall keep a Register of the Voting Members admitted to membership of SBHI for the current year in accordance with the Act and the Non-Voting Members. The Register shall be maintained in such way as to ensure a distinction between the Voting and Non-Voting Members and the legally required register of Voting Members can be provided to the Companies Registration Office. 5.5 Membership of SBHI shall be for the year or part thereof ending on 31 December. Non- Voting Members who are eligible to become Voting Members on attaining 18 years of age shall become members on the receipt of a signed assent form to being a Voting Member after their 18 th birthday. 5.6 Members shall be admitted provided that a membership form, whether a Voting Member form or a Non-Voting Member form (each a Membership Form ), is completed and submitted to the NRC together with the payment of an annual subscription (the Subscription Fee ). 5.7 The Subscription Fee shall be in the amount as the Board (as defined below) shall from time to time determine. As at the date of this Governance Handbook, the Subscription Fee shall be: 5 for each Voting Member; and of no monetary cost, for each Non-Voting Member. 5.8 The Subscription Fee shall be due and payable: by 31 March in each year in the case of existing Voting Members; and immediately in the case of a new Voting Member on such person becoming a Voting Member. 5.9 The paid-up Subscription Fee shall be dealt with as follows: Where a person has indicated that they wish to join a Branch on the Membership Form, 1 will be retained by the NRC, for membership of SBHI and the remaining 4 will be credited to the account of the relevant Branch. Where a person has decided they would not wish to join a Branch on the Membership Form, or they live in an area where there is no Branch, the 5 fee will stay with the NRC with 1 of this being used towards company membership.

4 5.10 Membership of SBHI shall cease if the annual subscription is not paid by 31 st March in the year upon which it becomes due. 6. ANNUAL GENERAL MEETING 6.1 Pursuant to Article 4.1 of the Articles, SBHI shall hold a general meeting in every calendar year. 7. BOARD 7.1 The running of SBHI shall be the responsibility of the Board of Directors. The number of Directors shall not be less than three (3) pursuant to the Articles but it is expected that the Board shall generally consist of at least six (6) members. 7.2 At each Annual General Meeting following the date of this Governance Handbook, the following Election Procedure shall occur: Elections to the Board will be held at the Annual General Meeting. The conduct of the elections will be overseen and adjudicated on by the returning officer appointed by the Directors (the Returning Officer ). Every year, prior to the Annual General Meeting, three elected Directors will signal their intention to retire at the Annual General Meeting. The elected Directors who retire will be chosen from amongst those elected members of the Board who either: volunteer to retire, or have completed a term of three years or more on the Board of Directors. If the number of elected Directors who meet these criteria is more than three, then lots shall be drawn to determine those who will stand for re-election. The only circumstance in which there will be elections for more than three positions to the Board of Directors at any Annual General Meeting is if more than three elected members of the Board of Directors voluntarily decide to resign. 7.3 At least 6 weeks prior to the Annual General Meeting, the NRC will contact every Voting Member then on the Register in order to provide them with information on the forthcoming Board elections and the nomination process. 7.4 All members then on the register will be sent information in relation to the election including, but not limited to, the number of Board vacancies for elected Directors, and the procedure for proposal of candidates for nomination to the position of Director. 7.5 Candidates must be natural persons capable of carrying out the statutory office of Director and are not required to be a Voting Member. 7.6 The completed nomination form shall include the candidate s name, signature, contact details, details of his/her skills and affiliation with SBHI as well as a brief biographical note about the candidate of no more than 250 words. 7.7 All completed nomination forms must be received in the NRC office no later than 4 weeks prior to the Annual General Meeting.

5 7.8 Where there are more candidates than seats available for Directors, all received nominations forms are to be reviewed by the existing Board against the below listed criteria. Whether the nominee is judged to have the potential to make a material contribution to SBHI and its Participants including a demonstrated competence to lead in their particular area. Whether the nominee has experience of serving on management committees/boards. (d) (e) The balance of the Board of Directors membership in terms of geographic, gender, and sectoral specialty as well as those persons having spina bifida and/or hydrocephalus or have a family member with spina bifida and/or hydrocephalus. Particular specialist skills that are deemed to be needed on the Board e.g. legal, finance, corporate/charities governance, fund-raising, communications, advocacy, etc. Strategic development of relationships with particular sectors e.g. public sector, statutory, private sector, academic, etc. 7.9 The review will be conducted by a sub-committee of the Board specifically formed for such purpose, which will review all applications received and make recommendations to the Board as to which nominees should proceed to be put forward for election in accordance with the below process. Preference shall be given to candidates who would best fulfil any key skills or other criteria the Board considers to be missing or underserved on the Board and to any Director who is independent of the Company s services, where no other independent person is represented on the Board Upon approval of the final list of nominees for election by the full Board, the running of the election for Board membership shall be conducted as per the agreed process as outlined below In the event of there being fewer candidates for election than vacant positions on the Board of Directors, then the number of positions to be filled by election at the Annual General Meeting will be reduced to the same number as there are candidates. After the election is completed, the new Board will then have the option of making additional co-options in accordance with the Articles to make up for the shortfall in positions that could not be filled by election At least 21 clear days prior to the Annual General Meeting all members then on the register of members of the Company must be sent a voting card, ballot paper, postal ballot envelopes and explanatory note on conduct and rules of the elections together with a notice of Annual General Meeting drawn up in accordance with the provisions of the Act All members entitled to vote at a General Meeting of the members are entitled to vote on the election of Directors The ballot paper will list the names of the approved candidates in alphabetical order and will include the biographical note from each candidate s nomination papers If a Non-Voting Member becomes a Voting Member between the time of the issuance of documents above, such member shall be provided with the relevant election documents and shall be entitled to vote in the election.

6 7.16 In the case of there being a greater number of candidates than vacant positions, then the system of voting will be a points system where the maximum number of points a voter may give to any individual candidate will be determined by the total number of candidates. Based on a sliding scale, members shall be asked to assign points to the nominees of their choice, with the highest points going to the nominee of their first choice, second highest points going to the nominee of their second choice and so forth. For example, where there are three places to be filled and there are nine nominees, each voter will assign nine points to his / her nominee of first choice, eight points to his / her nominee of second choice, seven to the third, six to the fourth, five to the to the fifth and so on The nominees who receive the highest overall number of points will be deemed elected. In the case of equality of votes for the final position, there will be a lottery conducted amongst the nominees tied on equal points Voters may submit their ballots at the Annual General Meeting or by post to the Office, received no later than 5 p.m. on the last working day prior to the Annual General Meeting. Any postal ballots not accompanied by a voting card or failing to comply with the security and authentication measures determined by the Company Secretary will be deemed to be void. To be entitled to vote on the day of the Annual General Meeting, a voter must be on the Register of Voting Members and not have previously submitted a postal voting card A Branch Chairperson or Branch Administrator shall resign that position on being elected or co-opted to the Board of SBHI. 8. OFFICERS AND BOARD ADVISORS 8.1 Following the election of the new Board, the Directors shall, from amongst them, appoint the following offices: (d) (e) Chairperson* Vice Chairperson; Honorary Treasurer; Honorary Membership Development Officer; Honorary Head of SBHI Governance. *The position of Chairperson may only be filled by a Director that has already served for at least one year as a Director. 8.2 In addition, following the election of the new Board, the Directors shall appoint a Board Administrator, which may be a Director or may be another person appointed by the Board to fulfil such role. The Board Administrator: shall attend and keep the minutes of all the meetings of the Board and of the Members of SBHI; may observe to the giving and serving of all notices of SBHI; shall prepare, under the guidance of the Board a report on the general condition and progress of SBHI during the preceding year for consideration at the Annual General Meeting;

7 (d) may do all such things as the Board shall determine from time to time. 8.3 In accordance with the Act, SBHI must have a Company Secretary which fulfils the criteria set out in the Act and carries out the statutory duties of the Company Secretary. Where the requisite criteria are met, the Board Administrator may fulfil that role, or SBHI may appoint a professional or other qualified Company Secretary to carry out such role. 8.4 The Honorary Treasurer: The accounting methods and procedure of SBHI shall be observed by the supervision of the Honorary Treasurer. The Honorary Treasurer may from time to time request from the Company Secretary such financial reports as may be required by the Board. 8.5 The Honorary Membership Development Officer: The primary role of the Honorary Membership Development Officer is:- (i) (ii) to develop and strengthen the membership structure within SBHI; to enable implementation of the membership structure. The Honorary Membership Development Officer is responsible for effectively linking together all those involved in the spina bifida hydrocephalus community in Ireland; those living with spina bifida and/or hydrocephalus, and their support networks. 8.6 Head of SBHI Governance The Head of SBHI Governance shall be responsible for ensuring the carrying out of and overseeing the legal and corporate governance duties of SBHI. 8.7 Any Director may, together with any other member of the Board, sign all documents, cheques, notes or other obligations in the name of and on behalf of SBHI. 8.8 In the performance of his or her duties each Officer shall be responsible to the Board. 8.9 The members of the Board shall be eligible for re-appointment to the same office or may stand for appointment to another office The Board shall have the power to appoint up to two advisors who may provide advice and assistance to the Board; however, in no case shall any such advisor conduct himself or herself in such manner as to be considered a shadow director in accordance with the Act The Board shall appoint a Chief Executive Officer (CEO), who shall be responsible for day to day running of the company with the delegated authority defined in the Conditions of Engagement of the CEO. The CEO shall not be a Director The Board shall have power to invite to attend Board meetings, such person or persons as it may deem fit, such persons may by permission of the Chairperson take part in the discussion of the business of the company but not being a member of the Board may not vote and must leave the meeting on being requested to do so by the Chairperson 8.13 In the event of the death, resignation or insolvency of any elected officer of the Board, the Board shall have power to declare the position of such officer as vacant and may appoint

8 any persons to the Board to fill a casual vacancy as required in accordance with the Articles. The Board shall have power to act not withstanding any vacancy that shall not have been filled during the year. 9. SUBCOMMITTEE OF THE BOARD 9.1 Any sub-committee appointed, in accordance with Article 8.4 of the Articles shall have power to invite to its meetings any person or persons who may be able to give expert or other advice or other special information on any subject and to serve thereon during the consideration of that subject. 9.2 Every Sub-Committee shall submit a report of its proceedings to the Board if requested by the Board to do so. 9.3 No expenditure shall be incurred by any sub-committee without the prior sanction of the Board. 10. NATIONAL EXECUTIVES' COMMITTEE 10.1 The National Executives' Committee (the NEC ) shall comprise of the Board and 3 representatives from each Branch. For the purpose of this Governance Handbook, the Chairperson and Board Administrator of each Branch shall, ipso facto, be two of the Branch Representatives on the NEC and any other Officer of the Branch may be chosen to be a member. If any of these Branch Officers is unable to attend a meeting of the NEC, the Branch may send one substitute for each Officer unable to attend. The substitute shall have the same voting and other rights as the official Branch Representative Questions arising at any meeting shall be decided by a majority of votes. Each Member of the NEC shall have one vote At meetings of the NEC, 6 (six) Members of the NEC shall form a quorum The Chairperson of the NEC shall have no extra or casting vote The NEC shall have authority to recommend policy for the conduct of the affairs of SBHI, save that no such recommendation shall be inconsistent with or shall affect or repeal anything contained in the Constitution of SBHI or otherwise contravene the statutory duties of the Directors of SBHI The NEC shall have power to invite to attend NEC meetings, such person or persons as it may deem fit. Such persons may by permission of the Chairperson take part in the discussion of the business of the NEC but not being a member of the NEC may not vote and must leave the meeting on being requested to do so by the Chairperson All members of the NEC entitled to attend shall be given not less than seven clear days' notice of each NEC meeting. The Notice shall be communicated in writing to them at the addresses shown in the records of SBHI Particulars of the business to be transacted at each NEC meeting shall, in so far as is practicable, be stated in the notice convening the meeting Members of the NEC desiring to place a Notice of Motion on the agenda for the next NEC meeting, may do so by giving the Company Secretary fourteen days notice thereof in writing.

9 10.10 The NEC meetings shall be held at such times and places as the Chairperson of SBHI may from time to time determine. 11. EMPLOYEES 11.1 The Board shall be empowered to employ full-time or part-time officials, servants or agents for the purpose of the business and other activities of SBHI, but no Participant of SBHI shall be appointed to or shall hold any salaried office of SBHI or an office paid by fees but can avail of the service of SBHI No person dismissed as an employee of SBHI can become a Participant of SBHI. 12. BRANCHES 12.1 The Board may from time to time form Branches to carry out the objects of SBHI in specified areas. The areas so defined shall be determined by resolution passed by the Board and shall be recorded in the minutes. The Board may alter the areas from time to time A Branch shall not be recognised as a properly constituted Branch of SBHI until its formation is ratified by resolution passed by the Board and an undertaking in writing is received from the Chairperson or Vice-Chairperson of the Branch in question, undertaking on behalf of the members thereof to accept and abide by the Constitution and this Governance Handbook of SBHI Membership of the Branch shall consist of Participants of SBHI admitted to SBHI by the Branch in accordance with the requirements of Section 5 of this Governance Handbook and as recorded on the current Register kept by the NRC. Participants shall be categorised as Voting Members and Non-Voting Members at Branch level for the purposes of ensuring the register of the NRC is maintained correctly The Branch Administrator can request a list of Members who have indicated their willingness to join a Branch on completion of their Membership Form. This request must be made to the Company Secretary, who keeps a list of all current Members. Any transfer of data will be carried out in line with the SBHI Data Protection Policy Branches shall carry out their functions in accordance with this Governance Handbook and in accordance with directives issued by and policy laid down by the Board. As the Branches are not separate legal entities from the Company, their conduct shall be at all times in accordance with the Constitution Branch Executive Committees (as defined below) shall be subject to the general direction and control of the Board and they shall account to the Board for all moneys received on behalf of SBHI and for all moneys expended Each Branch shall hold an Annual General Branch Meeting between 1 st January and the 31 st March each year for the purpose of electing the following: (d) Branch Chairperson; Branch Vice-Chairperson; Branch Administrator; Branch Membership Development Officer; and

10 (e) so many Committee Members as the Members of the Branch deem necessary for the conduct of the affairs of the Branch; (together the Branch Executive Committee ) At least 21 days prior to holding an Annual General Branch Meeting the Branch Administrator shall advise each member of the Branch and the Company Secretary (on behalf of the NRC) of the date, time and location of the Annual General branch Meeting Within 14 days from the holding of the Annual General Branch Meeting the Branch Administrator shall advise the Board Administrator of the name and address of the officers and Committee Members elected The Branch Executive Committee shall have power to fill any vacancy on the Committee which may occur between Annual General Meetings and may co-opt additional Members to the Committee. A new or co-opted member of the Branch Executive Committee must first join as a Company Member. Any change in the Committee shall be advised in writing within fourteen days to the Board Administrator In the event of Branch Officers failing to carry out the objects of SBHI or to comply with the directions of the Board, then the Board shall be entitled to remove the said officers In the event of a Branch failing to carry out the objects of SBHI or to comply with the directions of the Board, then the Board shall be entitled to dissolve the Branch. On the dissolution of a Branch, all property, books, records, moneys and other assets shall belong to SBHI and shall be handed over to SBHI in the manner determined at the time by the Board where upon the Branch shall be deemed extinguished and terminated by the Board The Branch Executive Committee shall cause minutes to be duly recorded for the purpose of all appointments of offices of the Branch of the names of those present and any meeting of the Branch Executive Committee or sub committee of same of all resolutions passed and business transacted at all meetings of the Branch Executive Committee and or subcommittees. Such minutes shall be maintained by the Branch Administrator and copies provided to the Company Secretary To co-ordinate the work of the Branches and to communicate to the Branches the decisions of the Board on matters affecting the policy and administration of SBHI, the Board shall prepare and issue to the Branches from time to time a Bulletin to be known as "Notes for the Guidance of Branches" The Branch may not pledge the credit of SBHI by way of Mortgage, Bill of Sale, Promissory Note or otherwise without prior written consent of the Board A Branch may only enter into a contract on behalf of SBHI with prior approval from the Board of Directors A copy of the Constitution and this Governance Handbook are freely available on the website of SBHI at [ ]. A Member of SBHI may also request a copy of the Constitution and/or Governance Handbook to be furnished by the Branch on payment of 5 or such other sum as the Board may from time to time decide. 13. THE MEMBERS OF THE BRANCH A Branch shall hold a meeting of its members at least once in every three months.

11 13.2 At least [21] days prior to holding any general meeting, the Branch Administrator shall advise the Branch Executive Committee and the Company Secretary of the date, time and location of the meeting. A Branch shall furnish a report of its proceedings to the Company Secretary. 14. BRANCH CHAIRPERSON The Branch Chairperson shall have the rights afforded to him or her under the Notes for Guidance of the Branch. 15. BRANCH ADMINISTRATOR 15.1 The Branch Administrator: (d) (e) (f) (g) (h) (i) shall cause to be deposited the funds of the Branch in SBHI's name, in such bank or banks as the Board shall designate and shall cause to be prepared such financial returns or reports as may be necessary in relation to same; shall attend and keep the minutes of all the meetings of the Branch Executive Committee and shall liaise with the Company Secretary in relation to such information; shall have charge of the books, documents, and papers of the Branch; shall conduct the correspondence of the Branch; shall prepare under the guidance of the Branch Executive Committee a report on the general condition and progress of the Branch during the preceding year for consideration at the Annual General Branch Meeting; shall be responsible for the transmission of proposed contracts to be entered into by the Company to the NRC in accordance with the section Execution of Documents herein; shall be responsible for ensuring all receipts and expenditures of the Branch are conducted in accordance with the section Branch Funds herein; the safekeeping of the cheque book of the Branch; and shall, at any time upon the receipt in writing of a request from the Board, furnish to the said Board all books, documents, and records of the Branch for inspection The conduct of the Branch in relation to Branch Funds shall be under the supervision of the Honorary Treasurer. 16. BRANCH MEMBERSHIP DEVELOPMENT OFFICER 16.1 The primary role of the Branch Membership Development Officer is:- To develop and strengthen the membership structure within the Branch; To enable implementation of the membership structure; The Branch Membership Development Officer is responsible for effectively linking together all those involved in the spina bifida hydrocephalus community

12 in the defined Branch area; those living with spina bifida and/or hydrocephalus, and their support networks; (d) shall be responsible for ensuring membership information is provided immediately to the Company Secretary for recording in the Company s CRM system. 17. BRANCH FUNDS 17.1 The Board may, by Resolution, make regulations governing the control of Collections, Raffles, Membership Fees, and other fundraising activities of SBHI. The regulations may specify the amount of the Branch funds which must be remitted to the Board and the amount of the Branch funds which may be spent by the Branch and may impose such limits, restrictions, or conditions for the proper administration of the Companies financial affairs by the Branch as the Board shall deem fit. Different regulations may be made for each Branch if necessary. Branches shall be bound by such regulations as are applied to them by the Board The Chief Executive Officer or whomever the Board may, by Resolution, from time to time appoint, shall be the point of contact between SBHI and Government Departments, the Health Service Executive and all other public funding agencies. The Chief Executive Officer shall co-ordinate all communications between Branch representatives and such agencies All purchases, with the exception of invoices issued by SBHI, to be entered into by any Branch with a value of: 0-3,000 must be signed off by the Branch Administrator and checked by the Branch Chairperson prior to undertaking such expenditure; 3,000 or greater must be submitted to the Honorary Treasurer together with three quotes for the subject matter of the expenditure and requires approval from the Honorary Treasurer prior to execution All receipts for expenses of any value shall be submitted to the Branch Administrator who shall be responsible for submitting such receipts to the NRC at accounts@sbhi.ie in soft copy and forwarding, by registered post or courier, the receipts in hard copy The Branch Administrator, in conducing his or her duties shall ensure: o All monies are signed in and notified to accounts@sbhi.ie when received, and signed out and notified to accounts@sbhi.ie when paid in to the Branch bank account; o Cash donations are documented and notified to accounts@sbhi.ie, counted, and deposited immediately. 18. BANK ACCOUNTS 18.1 All bank and similar accounts at SBHI or Branch level shall be opened in the name of "The National Association for Spina Bifida and Hydrocephalus Ireland Limited" T/A "Spina Bifida Hydrocephalus Ireland" by the Board All Branch bank accounts shall be opened at such bank required by the Board and the CEO or such other person required by the Directors shall have access to and signatory rights on all Branch bank accounts.

13 19. ACCOUNTS AND AUDIT The financial accounts shall be made up to the 31st December in each year and shall be with the auditors by the following 14th February and audited as soon as practicable thereafter. 20. EXECUTION OF DOCUMENTS 20.1 The Board may authorise any officer or officers, agent or agents to enter into any contract or execute and deliver any instrument or document in the name of and on behalf of SBHI, and such authorisation may be general or may be confined to specific instances or purposes. Only the Board shall have the power or authority to bind or obligate SBHI by any agreement or to pledge its credit or render it liable for any purpose or in any amount Any contract, instrument, or document to be entered and delivered in the name of and on behalf of SBHI which has been decided upon and/or negotiated by a Branch must be provided to the NRC for approval. Upon approval, the NRC may then arrange for the signature of such contract, instrument, or document as set out in paragraph 20.1.

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