Bylaws for Angelman Syndrome Patient Family Advisory Council
Membership
Members will consist of parents and caregivers of a child who has received care in the Angelman Syndrome Clinic. All members will become official Children’s Mercy volunteers and must comply with the requirements set forth by Volunteer Services. Parents of the same household have one vote.
Application process
To achieve a diverse representation and work towards our mission, the Council has created an application process for potential members. The Angelman Syndrome Patient Family Advisory Council will review all new applications at regular meetings. Council will then vote to fill available seats.
Size
The council will strive for membership of no less than 5 family members and no more than 14 family members at any given time. Children’s Mercy staff are non-voting members unless they are a member as a parent or primary caregiver of a patient. Recommendations for staff representation include individuals from physicians, nursing, research, and others the committee determines supports its mission.
Terms
Commit to serve on the Angelman Syndrome Patient Advisory Council for a minimum of 2 years. Terms begin at approval of application.
- At the end of a two (2) year term, active PFAC members who have met membership qualifications may be invited to serve another two (2) year term.
- Attendance records are reviewed every six months and appropriate communication and action is facilitated by the PFAC Chair. Excused absences due to health care needs are excluded from the attendance expectation.
- PFAC members may serve an unlimited number of consecutive terms.
Attendance
Consistent and active attendance is vital to the purpose of the Council. Each member is strongly encouraged to attend and participate in all PFAC meetings and conference calls. Council members are required to attend 50% of the meetings within a 12-month period either in person or phone/video conferencing. If a member cannot attend, out of courtesy for the group he/she will notify the staff facilitator or Chair as soon as possible. Meetings are subject to be canceled or rescheduled if majority of members are unavailable. A quorum of 50% is required to vote on issues. All decisions that require a vote need a simple majority to pass.
Officer elections
Council members can nominate themselves or other members for leadership roles. Elections will be held every June as terms will be limited to a year with a one-time renewal option. Leadership terms will run from July 1 to June 30 following the Children’s Mercy fiscal year.
Chair
Organize and lead meetings, including defining agenda and action items. The Chair will be the PFAC representative at official meetings when needed.
Co-chair
Support the Chair in his/her duties including serving as acting Chair during the Chair’s absence, defining agenda, record minutes, track the member volunteer hours associated with this PFAC and submit them to Children’s Mercy staff liaison.
Member expectations
The council will serve as an action-oriented group, with the expectations of time invested outside meetings. However, it is important to note that this council will not meet the needs and capacity of a Support group.
Members will:
- Serve as an advisory resource to administration and staff of the Angelman Syndrome Clinic and its programs.
- Advocate for research, education, and clinical programs to improve the quality and accessibility of care.
- Assist in the development and review of educational materials.
- Help recruit, create, and strengthen community awareness of Angelman Syndrome.
- Respectfully listen and tactfully discuss ideas, issues, and concerns.
- Respect the privacy and confidentiality of other council members, Angelman Syndrome patients/their families and all staff.
- Advise in developing fundraising activities for the clinic and research.
Any articles of these By-laws may be added, deleted, or amended by majority of the vote of at least 2/3 of the council.
Approved: 5/17/23