Meeting Minutes
June 22, 2008 at 7:30 p.m. EDT
Conference Call of the inaugural NPKUA Board of Directors meeting
Voting members in attendance:
- Rhonda Connolly representing PKU Children’s Network
- Tanya Drake representing Minnesota PKU Foundation
- Mike Foust representing Ryan’s PKU Foundation
- Judy Griffith representing MACPAD
- Rob Kerr representing Maryland Alliance of PKU Families
- Kelly McDonald representing North Texas PKU Association
- Dick Michaux representing Michaux Family Foundation
- Rachel Kaup New England Connection for PKU and Allied Disorders
- Corinna Vonderwell representing Indiana PKU and Allied Disorders Association
Others in attendance:
- David Donatucci
- Bob Johnstone
Judy Griffith called the meeting to order and took attendance. Attendees introduced themselves and their relation to PKU and the NPKUA.
The first order of business was to elect NPKUA officers.
Officer positions were elected as follows:
- Dick Michaux, President. Nominated by Judy Griffith. Vote was unanimous
- Judy Griffith, Vice-President. Nominated by Rob Kerr. Vote was unanimous
- Rob Kerr, Treasurer. Nominated by Kelly McDonald. Vote was unanimous
The NPKUA By-Laws authorize an Executive Committee consisting of the President, Vice-President and Treasurer. The Executive Committee will handle the day-to-day operations of the NPKUA between meetings and will be guided by the Board of Directors.
Other officers:
- Kelly McDonald, Secretary. Nominated by Dick Michaux. Vote was unanimous
Judy reviewed the mission and purposes of the NPKUA and asked for discussion and commitment. There was discussion on “ultimately seeking a cure,” as part of the mission. Other discussions included issues and challenges within the PKU community. Some states are offering, or may offer in the future, an opt-in program, allowing newborn screening to be the parent’s choice instead of state mandated. The basis of the challenge is, at least, twofold: the concern over abuse and violation of genetic data privacy, as well as concern over funding for clinics and staff to serve the diagnosed.
Dick discussed the formation of six NPKUA committees. The By-Laws authorize standing committees as follows: Research Development and Review, Nominating and Personnel. He proposed the NPKUA Nominating Committee include Membership, and it was accepted by consensus. An Advocacy Committee, Funding Committee and Public Relations Committee were proposed, and accepted by consensus. It was stated that each committee is to be chaired by a NPKUA board member. Board members were asked to volunteer as Chair for a committee, and each Chair position was approved unanimously by the board. The accepted committees and Chairs are as follows:
1. Research Development and Review Committee (RDRC) – Judy Griffith, Chair. Judy.Griffith@NPKUA.org
The Research Development and Review Committee will solicit and review research proposals and report their findings to the Board. The RDRC will also recommend an overall research strategy to the Board and will work with researchers to pursue research projects or to modify existing projects in a way that will most benefit those with PKU in accordance with the strategy that is approved by the Board. The RDRC may at some point be headed by a Chief Scientific Officer who may or may not be an employee of the Alliance. The RDRC, subject to the approval of the Board, will set membership limits, requirements and policies for the RDRC. Dick stated that RDRC’s have been an important plank of already established orphan disease organizations.
2. Nominating/Membership Committee – Dick Michaux, Chair. Dick.Michaux@NPKUA.org
The Nominating Committee will be responsible for nominating individuals to serve as At-Large Directors. The Nominating Committee is also responsible for establishing the policies and criteria for nominations (subject to Board approval) of At-Large Directors, including the time frame for nominations and the manner by which the Nominating Committee shall make nominations. Dick proposed the inclusion of Membership to the Nominating Committee, and it was accepted by the Board. This aspect of the committee will be responsible for establishing the classification of memberships and the dues structure.
3. Personnel Committee – Tanya Drake, Chair. tanya.d@comcast.net
The Personnel Committee shall establish criteria for the hiring, performance and evaluation of the Executive Director and other employees of the Alliance. This committee shall make recommendations to the Board of Directors regarding candidates for positions, salaries, bonuses, and benefits. It was discussed that the Executive Director may need an assistant by the second year of NPKUA operations.
4. Public Relations Committee –Corinna Vonderwell, Chair. cvonderwell@vinu.edu
The Public Relations committee will initially work with Tricia Lawson and WeissComm Partners (WCP) on the NPKUA public relations campaign. This committee will also serve as the Launch Committee, handling much of the communication between the NPKUA and the rest of the PKU community, such as the posting of press releases to related websites, the Emory University PKU list-serve, clinics, and to local organizations. Creating an expanded and appropriate NPKUA website will be accomplished in this committee.
5. Funding Committee – Rob Kerr, Chair. Rob.Kerr@NPKUA.org
The Funding Committee will work with the Treasurer on the funding of NPKUA operations.
6. Advocacy Committee – Kelly McDonald, Chair. Kelly.McDonald@NPKUA.org
The Advocacy Committee will advocate for PKU favorable local and national legislation and insurance coverage. This committee will also advocate for newborn screening for PKU and other disorders. This committee will coordinate with other metabolic disorder national organizations to advocate for issues of common interest.
Each Chair is to reach the following goals by the next meeting, set for October 12,. 2008 at 7:30pm EST:
- Recruit a Co-Chair
- Recruit other members to the Committee (Committee members do not have to be NPKUA members)
- Establish a mission statement for the Committee
- Set an agenda for plans to carry out the Committee’s mission
- E-mail a Committee report to Kelly McDonald, Secretary by October 1, 2008 with items to be included on the agenda
- Give a Committee report at the next NPKUA meeting
Bob Johnstone reviewed and explained the budget of $375,000 covering the first 2 years of operations.
Dick reviewed the current fundraising status and stated that of the start-up goal of $30,000, NPKUA raised $31,066 – of which $6,131 has been spent. To date, of the $375,000 fundraising goal for the first 2 years of operations, $32,727 has been raised. The Funding Committee will access the following sources to continue fundraising for the first two year operations budget: Government Agencies, Foundations, membership dues, special events like PKUCycleAmerica, individual donations and matching donations from companies doing business with the PKU community. Any matching donations from companies will not be conditional and will not give the companies any special status or influence. Dick expects to raise $100,000 from PKUCycleAmerica this summer.
Judy gave an overview of 501(c)(3) filing status and volunteered to handle all 50 state registrations in lieu of procuring an attorney. The NPKUA must register as a non-profit in each state to receive funding dollars from that state. A motion was unanimously approved by the Board. Judy stated that the NPKUA was incorporated in the state of Delaware.
Dick held discussion of membership status, Associate Member categories and Associate Member dues structure. These decisions will be made by the Nominating/Membership committee. He pointed out the importance and significance of these decisions. Dick mentioned that dues should be flexible enough to not preclude membership participation by any Associate Member category. Local PKU organizations will not pay annual dues.
Dick reviewed staffing issues, including that the Personnel Committee needs to establish a job description, salary range and recruiting strategy for the Executive Director. The hiring of the Executive Director is an immediate priority. It is planned for the Executive Director to initially work from home and perhaps in the second year of operations to move to an office facility, and eventually to hire an assistant. Dick mentioned it would be ideal for the Executive Director to be hired from within the PKU community – someone already working with PKU families.
There was discussion of the launch strategy, including communication methodology and website design. It was mentioned that a potential source for further npkua.org website design is Ben Carr, with Carr Innovation. Ben is a North Texas PKU Association member, and a parent of a PKU child. Dick asked Corinna Vonderwell to follow up with Kelly McDonald on this contact.
Communication among Board members in between conference calls will mostly take place on a NPKUA Nexo site. The Nexo site is currently administered by Rob Kerr. Rob will email invitations to join the Nexo site to the Board. Rob will also set up e-mail addresses for NPKUA officers. The addresses will be set up through the npkua.org website to help reduce email traffic in personal e-mail.
It was further discussed that a press release would take place in the next couple of days. The press release will be written by WCP and reviewed by the NPKUA Executive Committee.
The call was then opened to new business. Dick Michaux proposed a Gray Power group for involving grandparents. He suggested that grandparents be proactively recruited, as they may be retired and have time to devote to the NPKUA. Multiple Board members mentioned the tremendous grandparent involvement they have seen within local organizations. Many grandparents are actively involved in their PKU grandchildren’s lives, often assisting with child care and meal preparations. Dick Michaux volunteered to organize this effort. These proposals were approved by consensus.
Dick also proposed a recognition award to honor those that have gone above and beyond to assist the PKU community. He suggested their legendary work and dedication be recognized with a plaque at NPKUA annual conferences or other appropriate venue. Dick will more fully outline this proposal to the Board. A recognition for donations made in honor of PKU persons will be acknowledged soon. These donations were raised during the chartering of the NPKUA to assist the NPKUA with initial start up costs.
Attendees were thanked for their participation.
Meeting adjourned at 9:45 p.m.
Respectfully submitted,
~Kelly McDonald
Secretary, NPKUA Board of Directors