After ten years of successful operation, the Board felt that some changes were needed to the By-Laws. We have grown from three families in 1993 to serving a population of 14,000 people with VHL in 72 countries of the world. The core team needed to support this expanded organization and keep it growing, is quite different than what was needed ten years ago. We have done a remarkable amount in ten years with all volunteer staffing. At this point, in order to grow, we know that we need to strengthen the home office: to expand our funding base, to obtain corporate and foundation grants, and to provide our many wonderful volunteers with the support they need to continue doing their good work.

We had two primary motivations for reviewing the By-Laws:

(1) in reviewing the Chapter structure, we wanted to group states into Regions. We reviewed the By-Laws with this in mind.

(2) at this point in our growth, we wanted to hire an Executive Director, and to specify the roles and relationships between the Executive Director and the Board. In general, the title of Chairperson of the Alliance has been replaced throughout with Executive Director.

The following is a summary of the changes approved and adopted by the Board of Directors on June 21, 2003.

Article III: Membership

Opening Paragraph: Language was deleted to make it consistent with the membership requirements set forth in Article III.

Section 1: Language was added making it a requirement of membership to complete an initial application and pay dues on an annual basis. Language was added requiring families who are affected by VHL but are unable to pay dues to notify the Alliance of their desire to be members and complete an initial application.

Section 2: Language was added regarding family memberships to require the completion of an initial application and the payment of dues on an annual basis. Language was deleted that gave family memberships two (2) votes and language was inserted to provide only one vote per family. Language was added requiring families who are affected by VHL but are unable to pay dues to notify the Alliance of their desire to be members and to complete an initial application.

Section 3: Language was added making it a requirement of professional membership to complete an initial application and pay dues on an annual basis.

Section 5: The section was deleted as it was repetitive of provisions in Article V, Board of Directors.

Article IV: Membership meetings

Section 1: Language was added requiring that the annual meeting of the membership be held in conjunction with the annual meeting of the Board of Directors. The title "Chairperson of the Alliance" was deleted and replaced with "Executive Director".

Section 2: Language was added requiring that the notice of a special meeting of the membership include the purpose(s) for which the meeting was called. The title "Chairperson of the Alliance" was deleted.

Section 5: Language was added requiring that proxies be mailed to the membership at least 45 days prior to the Annual Meeting, and must be returned at least 10 days before the meeting.

Article V: Board of Directors.

Section 2.a.: Language was added requiring that not less than fifty percent of the Directors be representatives of families affected by VHL.

Section 2.b.: The section was deleted as sentence one was redundant and by incorporating sentence two into Section 2.a.

Section 2.c.: Language was added allowing a Board officer to extend his or her term beyond six consecutive years in order to complete service as an officer.

Section 3: Language on chapter representatives on the Board was deleted. Provision regarding ex-officio members of the Board was deleted.

Section 4: Language was added providing that members of a director's immediate family may not serve during the term of a director, with immediate family being defined as parents, spouse, children, brothers, sisters, aunts, uncles, domestic partners or members of the household.

Section 6: Language added regarding resignation of board members requiring notice in writing and acceptance by a simple majority.

Article VI: Board Meetings

Section 1: Language added permitting the Board by majority vote to close meetings to persons other than directors.

Section 2: Language was added requiring at least 48 hours notice of special meetings of the board. Language was deleted that allowed the Chairperson of the Alliance to call a special meeting of the board.

Section 6: Added that meetings of the board be governed by Roberts Rules of Order.

Article VII: Officers

Section 1: Deleted reference to "Chairperson of the Alliance" as an officer of the board. Language added permitting board to designate additional officers. Language was deleted which permitted Board to appoint officers.

Section 4: Language was added permitting the Board to employ persons as it deems necessary. Language was deleted stating that agents hold office during the pleasure of the Board.

Section 7: Deleted (replaced with Section 11. Executive Director.)

Section 8: "Vice Chairperson of the Alliance" changed to "Vice Chairperson of the Board".

Section 11: Added to provide for Executive Director.

Article VII: Committees

Section 1: "Fund Raising" changed to "Development". "Legislative" deleted.

Section 2: Changed the composition of the Executive Committee to include officers of the corporation and one or more other directors selected by the Board.

Section 3: Changed the composition of the Nominating Committee to include the Chairperson of the Board, Vice Chairperson(s) and two other members of the Board elected by the Board. Deleted language requiring the Nominating Committee to present a slate of officers for election by the membership. Officers are elected by the Board.

Section 8: "Public Relations and Education Committee" changed to "Public Awareness Committee".

Section 9: Deleted (Legislative Committee).

Section 10: Language added requiring the By-laws Committee to provide opinions to the Board as to the interpretation of the By-laws.

Article IX: Advisory and Honorary Boards

Section 1: Language added giving the Medical Advisory Board authority to make recommendations and provide opinions on Clinical Care Centers.

Section 4: Language changed making the Chapter Council an option. Language added providing guidelines as to forming Chapter Council. Language deleted regarding specifics of Chapter Council function. Language deleted as to officers of Chapter Council.

Article XI: Contracts and Commitments.

Section 1: Language added giving authority to contract based on Board policy.

A copy of the By-Laws showing all the changes adopted, and a clean copy of the revised By-Laws as adopted, are available on the website, or can be supplied to you by paper mail upon request. For questions regarding the revised Bylaws, you may contact Thomas D. Rodenberg, Esq, Chair of the Bylaws Committee, Maria Shipton, Chairperson of the Board, or Joyce Graff, Executive Director.

As printed in the VHL Family Forum 11:3, September 2003. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.