

Revisions 1/30/08
Article I - Name and Location
Article II - Vision, Mission and Purpose
Article III - Membership
Article IV - Board of Directors
Article V - Board Meetings
Article VI - Executive Committee
Article VII - Officers
Article VIII - Committees
Article IX - Fiscal and Administrative Years
Article X - amendments
Article XI - Rules of Order
Article XII - Dissulution
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By Laws
Section 1 – Name. The name of this corporation is the Cystinosis Research Network, Inc., (CRN). Cystinosis Research Network is a non-profit tax-exempt organization founded in 1996.
Section 2 - Principal Office. The principal office of the Cystinosis Research Network is located at 302 Whytegate Court, Lake Forest, IL 60045.
Article II: Vision, Mission and Purpose
Section 1 – Vision and Mission. The Cystinosis Research Network’s vision is the discovery of improved treatments and ultimately a cure for cystinosis. The Cystinosis Research Network (CRN) is a vulunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. The Cystinosis Research Network funds research and programs primarily through donations from the public, grassroots fundraising events, and grants.
Section 2 - IRC Section 501 (C) (3) Purposes. The Cystinosis Research Network is organized exclusively for one or more of the purposes as specified in Section 501 (C) (3) of the Internal Revenue Code. The Cystinosis Research Network may make disbursements in the form of grants or contracts to organizations that qualify as exempt under Section 501(c)(3) of the Internal Revenue Code of 1996 (or the corresponding provision of any future United States Internal Revenue law.) The Cystinosis Research Network, its directors and its officers shall not be empowered to engage in any objectives other than as described herein. Notwithstanding any other provision of these articles, the corporation shall not carry on any other activities not permitted to be carried on: (A) by a corporation exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code of 1996 (or the corresponding provision of any future United States Internal Revenue law) or B) by a corporation, contributions to which are deductible under Section 170 of the Internal Revenue Code of 1996 (or the corresponding provision of any future United States Internal Revenue law
Section 3 - Statement of Purpose. The fullowing highlight key elements of the Cystinosis Research Network’s purpose:
The Cystinosis Research Network may have members who are individuals, institutions, and corporations. Membership in the Cystinosis Research Network shall be determined as fullows.
Section 1. Individual Members: Any person who completes an initial membership application and pays individual dues on an annual basis to the Cystinosis Research Network shall be an individual member and have the benefits, privileges, and obligations provided in the By-laws and Pulicies of the Cystinosis Research Network. Persons and family members affected by cystinosis who are unable to pay dues but notify the Cystinosis Research Network of their desire to be counted as members and complete an initial membership application will have regular membership status.
Section 2. Family Members: Each family who completes the membership application and pays dues at the family rate on an annual basis shall have the same privileges of membership as the individual member. Families affected by cystinosis who are unable to pay dues but notify the Cystinosis Research Network of their desire to be counted as members and complete an initial membership application will have regular membership status subject to the provisions of this Section.
Section 3. Professional Membership: Physicians and other health care professionals who complete an initial membership application and pay dues on an annual basis at the professional rate shall have the same privileges of membership as the individual member.
Section 4. Corporate or Institutional Members: Each corporation or institution shall designate one individual as its representative. Corporate or Institutional members shall consist of representatives of organizations and facilities with an interest in or relationship to the Cystinosis Research Network. Institutional members are not eligible to huld office. Dues and other requirements may be imposed by the Board of Directors. Corporate or Institutional members may request up to six copies of membership materials, and are authorized to make photocopies of Cystinosis Research Network materials for distribution to others within the Corporation.
Section 5. Honorary Members: Honorary members may be designated by the Board of Directors. Such members shall pay no dues and are not eligible to huld office.
Section 6. Non-U.S. Members: Persons and family members affected by cystinosis who reside outside the United States may be counted as Members of the Cystinosis Research Network, but do not have input on matters regarding the disposition of funds cullected within the United States.
Section 7. Term: Membership in the Cystinosis Research Network shall be for a term of one year from October 1 through September 30 of each year. Dues are due and payable on October 1 of each year. Members who join for the first time after June 1 will remain in good standing through September 30 of the fullowing year.
Section 8. Expulsion: Membership may be terminated at any time, with cause, after providing notice and the opportunity of a hearing to the member, by affirmative vote of two- thirds of the Board of Directors.
Section 9. Reinstatement: On written request filed with the Secretary, the Board of Directors may, by affirmative vote of the majority of the members of the Board, reinstate a former member to membership on such terms as the Board of Directors may deem appropriate.
Article IV: Board of Directors
Section 1. Powers and Duties: The Board of Directors shall have general power to manage and contrul the affairs and property of the Corporation and shall have full power, by majority vote, to adopt rules and regulations governing the action of the Board and shall have full power and complete authority with respect to the distribution or payment of the moneys received by the Corporation from time to time. All Board members shall be required to actively serve on at least one standing committee.
Section 2. Membership. The Board of Directors (the “Board”) shall consist of Board members and Officers who constitute the Executive Committee. Each director shall be of good moral character and have the skills, commitment, and dedication necessary to promote the mission of the Cystinosis Research Network. The Board of Directors hierarchy is: The Executive Committee, The Board Members, and the Members.
Section 3. Executive Committee: Officers. The Officers shall consist of the:
Section 4. Number, Composition, and Term of Office: a. The Board of Directors shall consist of not less than five (5) or more than nineteen (19) directors. The number of directors may be changed by vote of a majority of the entire Board but no decrease may shorten the term of any incumbent director(s). Not less than fifty percent of the Directors shall be representatives of families affected by cystinosis.
b. The term of service of the Officers and Board Members will be staggered. The initial terms for the President, Vice President for Education and Awareness, Vice President of Family Support and the Treasurer shall be three years. After the first term, the second term will be for two years. The term of office will continue to stagger from three years to two years. The initial terms for the Vice President for Research, Vice President for Development and Secretary shall be for two years. The subsequent term will be for three years. The term of office will continue to stagger from three years to two years. A vacancy on the Board of Directors and Executive Committee shall be filled by appointment of the President in consultation with the Executive Committee. Board Members or Officers shall be limited to two consecutive terms of three years. If there is a need that supersedes this limitation, then a Director may succeed for a third term by majority approval of the Executive Committee and the Board of Directors.
Section 5. Nomination and Appointment to the Board of Directors:
a. Nomination: Any member in good standing may nominate a member in good standing for consideration for appointment to the Board of Directors. Members will review the qualifications of the candidate and forward the nomination, along with any pertinent information about the candidate, to the Nomination Committee of the Board of Directors. This nomination can take place at anytime during the year. The membership will be notified as board positions expire or otherwise become available via the CRN website (www.cystinosis.org), or in writing if requested.
b. The Nominating Committee will provide the Board with a slate of candidates for consideration for appointment to the Board of Directors as vacancies occur. The Board will review the slate of candidates and appoint qualified members to the Board of Directors based upon the needs of the Cystinosis Research Network. This process will take place during the month of July, unless circumstances dictate otherwise. The membership will be notified via the CRN website (www.cystinosis.org) prior to the appointment process in order to allow the opportunity to contact the Board of Directors to voice their opinion. Members without internet access may request mail notification of appointments by indicating their desire via the membership application.
c. The Board of Directors will appoint by majority vote, new members to the Board based upon the needs of the organization. This process will take place on an annual basis if necessary in the month of July. However, based upon the needs of the organization, this process can be altered. The primary goal of the appointment process is to ensure that the Board has the appropriate number of qualified members to manage the affairs and meet the goals and mission of the Cystinosis Research Network. The Board will post the names of the new Directors to the CRN website (www.cystinosis.org) after their appointment.
Section 6. Qualifications: Directors shall be members of the Cystinosis Research Network in good standing. They will be of good moral background and possess the skills required by the position or office that they huld. They must not participate in, or have previous invulvement in activities that would discredit or detract from the stated mission of the Cystinosis Research Network.
Section 7. Vacancies: At any time during year, the Board may appoint, by majority vote, a replacement or new Director. This expedited process should only take place in situations where the needs of the organization outweigh fullowing the traditional process.
Section 8. Removal or Resignation: Fullowing written notice, a member of the Board of Directors may be removed by approval of two-thirds of the Directors whenever such member has failed to attend three consecutive meetings of the Board without justifiable cause or when his/her actions have not been in the best interests of the Cystinosis Research Network. Any director who decides to resign prior to the end of their term shall notify the Secretary in writing of the resignation with an effective date of resignation provided in the notice.
Section 9. Advisors to the Board of Directors The Board shall appoint a Professional and Scientific Advisory Board and any other advisors it deems necessary who will be indemnified in the same manner as the directors. Duties as assigned by the Board.
Section 10. Indemnification. The Cystinosis Research Network shall indemnify any board member made a party to any proceeding by reason of service as a board member if the director acted in good faith and, in the case of conduct as a director, that such conduct was in the best interest of the Cystinosis Research Network and in all other cases, that the conduct was not opposed to the best interest of the Cystinosis Research Network. However, there shall be no indemnification if it is proved that (a) the act or omission of the board member was material to the cause of action adjudicated in the proceeding and (b) was committed in bad faith, or was the result of active and deliberate dishonesty, or the board member actually received an improper personal benefit in money, property, or services or, in the case of any criminal proceeding, the board member had reasonable cause to believe that the act or omission was unlawful. The board members and officers of the Cystinosis Research Network shall not be liable to the Cystinosis Research Network or its members for money damages (a) except to the extent that it is proved that the board member or officer actually received an improper benefit or profit in money, property, or services or (b) except to the extent that a judgment or other final adjudication adverse to the person is entered in a proceeding based on a finding that the person's action or failure to act was the result of active and deliberate dishonesty and was material to the cause of action adjudicated in the proceeding.
Section 11. Conflict of Interest. Board members and staff are expected to avoid even the appearance of a conflict of interest and shall excuse themselves from invulvement in any decision where a conflict might appear to exist.
Section 12. Compensation: No Director shall receive compensation or salary in any form for his/her services but shall be reimbursed for authorized and documented expenses.
Section 1. Regular Meetings: The Board of Directors shall meet at least three (3) times per year, with one (1) meeting per year in person. Other meetings may be held by means of telephone conferences or equipment of similar communications by means of which all Directors participating in the meeting can hear each other. Participating in this type of meeting shall constitute presence in person. Directors shall be notified in writing of the time, place, and agenda for regular meetings at least fourteen (14) days in advance of said meetings. The Board by majority vote may close any meetings or parts of meetings to persons other than the Directors.
Section 2. Special Meetings: Special meetings of the Board of Directors may be held at any time and place upon call of the Chairperson of the Board, or by the Secretary upon written request of a majority of the Directors. Special meetings may be held by means of telephone conference or similar communication equipment. Notice at least 48 hours before of the time, place, and purpose of the Special meeting(s) shall be given to each Director.
Section 3. Quorum: A quorum shall consist of a majority of the Directors.
Section 4. Required Vote: An affirmative vote of a simple majority of those present shall be necessary for the passage of any resulution. A Director may not vote by proxy.
Section 5. Action Without Meeting: If Directors shall vote by unanimous written consent to any action to be taken by the Board of Directors, such vote shall have the same force and effect as if taken at a duly called meeting.
Section 6. All meetings of the Board of Directors shall be governed by the most current edition of Roberts Rules of Order.
Article VI: Executive Committee
Section 1. Membership. The Executive Committee shall consist of the seven Officers of the Cystinosis Research Network.
Section 2. Duties. A. Executive Committee - The Executive Committee shall oversee the affairs of the Cystinosis Research Network during periods between meetings of the Board. The Executive Committee shall do such acts and perform such duties as shall be specified in these bylaws, together with such other acts and duties as are not otherwise provided for herein to be performed by other persons. The Executive Committee shall at all times be responsible to the Board. The Executive Committee shall review the annual budget presented by the Treasurer. The Executive Committee shall serve without compensation. However, they may be reimbursed for their documented expenses on behalf of the Cystinosis Research Network, funds and budget permitting. B. Executive Director- The Executive Director is the chief administrator of the Cystinosis Research Network and is primarily responsible for the overall operation of the Cystinosis Research Network and supervision of its staff and programs. The Executive Director implements pulicies set by the Board, promotes achievement of the Cystinosis Research Network mission objectives and is directly responsible to the Board.
Section 3. Meetings and Quorum. The Executive Committee shall huld such meetings as it deems necessary upon such notice as it shall from time to time determine necessary and three members shall constitute a quorum for the transaction of all business of the committee. A majority of votes of those casting a ballot at any meeting shall be the act and deed of the Committee.
Section 4. Acts without a Meeting. The Executive Committee may, under such rules as it may from time to time prescribe, perform any or all of its acts or duties by mail, telegram, fax, electronic communication or telephone without the necessity of a face-to-face meeting.
Section 1. Order of Succession. In case of unexpected vacancy, immediate order of succession to the Presidency until such times that the Executive Committee can meet to appoint a successor will be:
Section 2. Duties
Article VIII: Committees
Section 1. Standing Committees. The standing committees of the Cystinosis Research Network shall be:
The Vice President of Development will serve as chair of the Development Committee, the Vice President of Research will serve as chair of the Research Committee, the Treasurer will serve as chair of the Finance Committee, the Vice President of Family Support will serve as chair of the Family Support Committee, and the Vice President of Education and Awareness will serve as chair of the Education and Awareness Committee. Chairpersons of the Membership, Advisory, and International Committees shall be appointed by the President in consultation with the Executive Committee and Executive Director.
Section 2. Ad Hoc Committees. Ad hoc committees and chairpersons may be created by the President as the need arises.
Section 3. Committee Members. Each committee chairperson, with the approval of the President, shall appoint other individuals to assist as necessary to carry out the work of the committee.
Section 4. Standing Committee Duties
Article IX: Fiscal and Administrative Years
Section 1. Fiscal Year
The fiscal year shall be from January 1 to December 31.
Section 2. Administrative Year
Officers and Directors shall take office on the date designated by the Board of Directors.
Section 1. These bylaws may be amended by the Board at any meeting provided that the resulution for amendment shall have been submitted to all board members thirty (30) days prior to the vote.
Section 2. To become effective, any amendment adopted by the Board must receive a two- thirds vote of the members voting.
Section 3. Amendments to these bylaws shall become effective immediately upon approval, or as specified in the amendment.
Section 4. Grammatical, punctuation and correlative corrections in these bylaws and/or amendments thereto, shall be affected by the bylaw chairperson at the time said bylaws or amendments were adopted, subject to the approval of the Executive Committee.
Article XI: Rules of Order. Roberts Rules of Order, latest revision, shall be the guide for conduct of all meetings where not in conflict with these bylaws.
Upon the dissulution of the corporation, the Board shall, after paying or making provision for the payment of all liabilities of the corporation, dispose of all of the Assets of the corporation exclusively for the purposes of the corporation in such manner, or to such organization(s) organized and operated exclusively for charitable, education, or scientific purposes as shall at the time qualify as an exempt organization(s) under Section 501(c)(3) of the International Revenue Code of 1996 (or the corresponding provision of any future United States Internal Revenue law) as the directors shall determine. Any such assets not so disposed of shall be disposed of by the Court of Common Pleas of the county in which the principal office of the corporation is then located, exclusively for such purposes or to such organization(s) as said court shall determine which are organized and operated exclusively for such purposes.