Committees and Projects
The IFOPA relies on the generosity of its volunteers, who donate many hours each year by assisting with fundraisers, staffing our Committees and more. Without them, our efforts would not be possible.
Here, you'll find brief descriptions of what each Committee does to serve you better. Also included are the Committee Chairs.
Committee membership is open to anyone. We hope you join one or more of them. No matter the size of the project, it all adds up in the end and your help will always be greatly appreciated. If you'd like to participate in one or more of the following groups, or would like more information about them, please contact the IFOPA office.
Fund Development Committee
Purpose: With input from the Executive Committee, the Fund Development Committee shall work with the Operations Manager to ensure the long term viability of the organization and assist the Operations Manager in securing sufficient funding to ensure that operating expenses, existing programs, and new projects are adequately funded. Such collaboration shall include, but not be limited to, identifying new opportunities to secure funding through an annual letter campaign, bequests & wills, corporate giving, grants, federal funding, residual income streams, and identifying and nurturing at least one or two new families per year that fundraise for the Association and F.O.P. research;
Chair: Gail Weakland
Purpose: The Finance Committee shall consist of 3 to 5 persons, including the Treasurer, who will be a voting member of this committee. The Finance Committee shall monitor the financial affairs of the Association and the performance of the investment managers and report to the Board of Directors quarterly, or more frequently, if needed. The Finance Committee shall alert the Operations Manager and the Chairperson of material deviations from the budget, and make such recommendations it believes will cause the Association to remain reasonably within fiscal responsibility and its budget constraints. The Finance Committee shall develop for approval by the Board of Directors investment goals and criteria for use in the management of the Association's long and short-term investments. Unless otherwise specifically directed in the instrument by which any property is given, bequeathed, conveyed or otherwise transferred to the Association, whether as a fiduciary or otherwise, the Finance Committee shall cause the property so received, or the proceeds there from, to be invested in such investments as, after appropriate investigation and in the prudent exercise of its fiduciary responsibilities, it determines to be advisable and appropriate. Audit Committee. The Audit Committee shall consist of 3 to 5 persons, including the Treasurer, who is a non-voting member of this committee.
Chair: Patrick Doerr
Audit Committee shall ensure that accounting policies and the internal control structure are regularly reviewed and appropriately implemented and that financial statements and reports are issued on time and according to regulatory obligations. Specifically, the Committee shall: 1) recommend an independent audit firm to the Board of Directors; 2) review the scope and plan for the independent audit and recommend any necessary changes; 3) review the previous year's management letter and ensure any issues were corrected by management; 4) review the results of the audit with the external auditor and resolve disagreements between the auditor and management.
Living Independently with Full Equality/LIFE Committee
Chair: Gretchen Emmerich
Purpose: The LIFE Committee's mission is to help people who have F.O.P. live full, satisfying and independent lives. Using money designated for this purpose, the LIFE Committee sponsors Quality of Life Awards to support and improve the independence and quality of life experienced by qualified applicants, usually by helping purchase mobility devices, training, etc. The LIFE committee shall report to the Board of Directors on its activities on a regular basis, and perform other duties as may from time to time be assigned to it by the Chairperson or the Board.
Chair: Nancy Sando
Purpose: The Board Development Committee shall be selected by the Executive Committee and shall consist of two members of the Board and two from the general Association membership. The Board Development Committee chairperson shall be selected by the Executive Committee and shall be a board member. The Board Development Committee shall recruit qualified individuals from among the Membership of the Association and/or the contacts of said Membership for nomination as members of the Board of Directors in the manner set forth by the Board. The Board Development Committee shall solicit potential directors, investigate their experiences and talents, and develop in the most qualified of these potential nominees an interest in serving on the IFOPA Board of Directors. The development of talented potential board members is a continuing responsibility of the Board Development Committee, in conjunction with the Board of Directors. Consistent with the original goal of the Association of bringing together persons with F.O.P., the Board Development Committee shall, if at all possible, recruit persons with F.0.P. as potential board nominees to ensure that at least two persons with FOP are on the Board at all times, even if one is in an advisory capacity.
Chair: Nancy Sando
Nominating Committee is a subcommittee of the Board Development Committee. The Nominating Committee shall consist of the Board Development Committee chairperson, a current board member selected by the Board Development Committee chairperson, and two past Board members selected by the Nominating Committee chairperson. The Board Development Committee chairperson shall select the Nominating Committee chairperson. The Nominating Committee shall review all applications of Board of Director candidates, interview each candidate by phone and also interview current board members regarding reapplying board members. The Nominating Committee shall, if at all possible, provide nominees to the Board to ensure that at least two persons with FOP are on the Board at all times. The Nominating Committee shall provide the Board with nominees of the number and qualifications requested by the Board in accordance with Section 5.2.
International President's Council (IPC)
Chair: Chris Bedford-Gay
Purpose: The International President's Council (IPC) serves as a communication system to exchange ideas over international boundaries and identify ways the Association can best serve its international members. The IPC chairperson shall be appointed by the Board Chairperson and shall perform other duties as may from time to time be assigned to it by the Chairperson or the Board.
Jeannie Peeper IFOPA Awards
Chair: Steve Eichner
Purpose: Jeannie Peeper IFOPA Awards recognize those who make exceptional contributions to the worldwide FOP community through their leadership, service, fundraising and accomplishments. The Awards Selection Committee is comprised of the following appointees of the board chairman: two persons from the general membership who have been active participants in the FOP community, an IFOPA board member and the IFOPA Operations Manager. The committee chairperson is selected by the committee and shall be one of the two general members. Jeannie Peeper is Honorary Chairperson of the Selection Committee. The committee recommends awardees in each of several categories and the slate is then considered for approval by the Board. Every award is not necessarily given every year and only one award is given in any one category each year.
Communications & Public Relations
Purpose: The Communications and Public Relations Committee consists of at least two people and works with IFOPA staff to increase awareness and understanding of FOP worldwide. The committee assists staff in creating and updating educational and news materials, and carries out other communication and public relations tasks as needed, employing the full range of media available. The committee particularly strives to reduce the prevailing rate of FOP misdiagnoses and resulting harmful treatments by increasing FOP awareness among doctors, nurses and other clinical care providers. This Committee works in collaboration with the IT and SS&O committees as well as other committees as priorities dictate. The Communications and Membership Manger attends as a guest at the invitation of the committee and works closely with the committee to determine marketing and communications priorities and content. The committee convenes at least quarterly and as needed.
Purpose: To provide all IFOPA families a way to connect with someone that has experienced what they might be going through. This is a way to provide members a way to connect and feel part of a community.
Strategic Staffing and Office Committee
Office Liaison: Nancy Sando
Purpose:The Strategic Staffing & Office Committee oversees and proactively considers staffing needs and operational improvements in collaboration with the Operations Manager. This Committee is responsible for the office staff and associated requirements, including office lease, equipment, staffing, and importantly linking to technology, C&PR, and other committees as priorities necessitate. Staffing recommendations may include, but are not limited to, change in the number of staff members and adjustments to staff job descriptions, as the nature of the office work dictates. This committee will also organize and conduct annual staff evaluations at the end of each calendar year. The results of which are reported to the board to enable consideration of salary adjustments and other staff issues. This committee is comprised of at least three board members, one of whom shall be the Treasurer. The Operations Manager attends as a guest at the invitation of the committee. The committee convenes at least quarterly and as needed. The Office Liaison chairs this Committee.
Information Technology (IT) Committee
Co-chair: Brian Harwell / Patrick Doerr
Purpose: The Information Technology Committee overseas and proactively considers information technology needs and improvements in collaboration with the Operations Manager. This Committee is responsible for making recommendations for information technology updates, partners, processes, and includes software changes necessary to maintain an efficient and secure office and associated technologies. This Committee is comprised of at least two board members and must maintain close collaboration with the SS&O and C&PR Committees and other committees as priorities dictate. The Operations Manager attends as a guest at the invitation of the committee. The committee convenes at least quarterly and as needed.
Chair: Paul Brinkman
Purpose: The Research Committee is comprised of one or more Board members and one or more volunteers from the FOP community, and IFOPA's Global Research Development Director who collectively liaise with FOP researchers in academic, industry and other institutions worldwide to advance our understanding of FOP, develop therapeutic options, and educate FOP community members worldwide. The Committee supports clinical trial planning and FOP community education and enrollment as needed, and other research support activities as advised by the Global Research Development Director and the Association's medical advisors. The committee advises the Board on the allocation of IFOPA funds to support research and the grant allocation process.