NPKUA Answers to Frequently Asked Questions

Why is there a need for a National PKU Alliance?

The PKU community is comprised of many local activists who have made extraordinary contributions in raising PKU awareness and research funds on a predominantly local level. An alliance will unite the many local activists to create an “organization of organizations,” to amplify the local voices – a national advocacy group made up of the many local PKU groups and community members committed to raising PKU awareness on a national level while ultimately seeking a cure for PKU.

What are the Purposes and Mission of the National PKU Alliance?

Mission:

The National PKU Alliance is dedicated to improving the lives of individuals and families associated with phenylketonuria, or PKU, through research, support, education and advocacy, while ultimately seeking a cure.

Purposes:

The NPKUA is currently forming through the combined efforts of PKU families from all around the United States. This group has established the following purposes for forming a National PKU Alliance:

To advance research relating to the treatment and/or cure of PKU by raising and distributing funds and establishing a Research Development and Review Committee.

To support local PKU organizations by encouraging and assisting in the development of new PKU organizations, working with local PKU organizations on fundraising and educational campaigns, and acting as a liaison among local PKU organizations in order to encourage networking and identifying treatment issues and working on possible resolutions.

To educate others about PKU and the issues faced by individuals and families by communicating best practices for treatment and other information to health care providers, creating communication pieces and other material for use by local PKU organizations and others, encouraging children and young adults to stay on diet, sponsoring national and international conferences, and providing current information to PKU organizations about recent developments in treatments and products.

To advocate for all individuals with PKU by working toward the enactment of PKU friendly legislation, seeking coverage by insurance companies for treatment, and aligning with support groups for related metabolic disorders to promote common goals.

What is the value of joining the NPKUA?

The NPKUA is a collaboration of PKU community members, joining together as a national voice and supporting local efforts in raising PKU awareness and driving advocacy and education, while ultimately seeking a cure.

The NPKUA will create a national voice for the PKU community, and will enhance your local organization’s efforts and provide a larger platform to achieve your organization’s goals.

The NPKUA will support local PKU organizations by encouraging and assisting in the development of new PKU organizations, working with local PKU organizations on fundraising and educational campaigns, acting as a liaison among local PKU organizations in order to encourage networking and identifying treatment best practices and communicating them to PKU clinics.

The NPKUA will also serve to help with education and advocacy efforts on a national level in an effort to advocate for all individuals and organizations dedicated to PKU.

We welcome all PKU organizations and community members to join the NPKUA and become a part of this national movement.

The NPKUA will form a Research Development and Review Committee (RDRC) to review PKU research proposals and develop recommendations to be shared with the Board of Directors to fund those with the best potential of finding real solutions to PKU issues.

The NPKUA will sponsor national and international conferences.

Why is "formality" required to create a National PKU Alliance?

The creation of a not-for-profit organization that is an alliance of local PKU organizations and community members requires that a formal process be followed which includes a legal/formal Membership Agreement. While the tone of the Membership Agreement is very formal, this is standard protocol. If your organization is considering becoming a member of the Alliance and has questions related to the membership agreement, please do not hesitate to contact Judy Griffith at 717-291-652 or Judy.Griffith@NPKUA.org for additional information.

Who will run the NPKUA?

A majority of the NPKUA decisions will be made by the Board of Directors, which is comprised of representatives of the organizations who are members of the Alliance. There is an Executive Committee that will oversee the NPKUA in terms of operations and supporting the Board of Directors. The members of the Executive Committee will include a President, Vice President, and Treasurer. An Executive Director will also be hired to manage the day-to-day activities.

What role will my organization play in the NPKUA? How will my organization have a voice in the NPKUA? 

As a member of the NPKUA, you will appoint a member of your organization to serve as a Director on the NPKUA Board of Directors to participate in meetings and represent your organization in any/all NPKUA decisions. The NPKUA Board of Directors collectively makes a majority of the decisions for the organization.

Will my regional organization still be able to conduct fundraising activities locally?

Yes. If you agree to be a part of the NPKUA, this will not affect what activities your organization conducts on a local level. As a member of the NPKUA, your organization is asked to contribute 75% of the research funds you raise which are not designated for a specific research purpose to the NPKUA. The NPKUA Board of Directors will determine how to dispense these research funds after receiving/reviewing recommendations from the Research Development and Review Committee.

If my organization joins the NPKUA, what is the time commitment required?

One member of your local organization is asked to be a member of the NPKUA Board of Directors. The Board member is asked to participate in two meetings per year including one by telephone and the Annual Board meeting held at the Annual Conference. We encourage your organization‘s Board member to attend the Annual Conference and for members of your organization to join NPKUA committees as well.

Can my organization’s Web site be linked to the NPKUA Web site?

Yes. As a member of the NPKUA your organization’s Web site should link to the NPKUA Web site and the NPKUA Web site will have a link to your organization’s Web site as well.

Does every local organization have to join the NPKUA? If they don’t join, can they get involved in other ways?

The NPKUA invites all local PKU organizations to join and contribute to the accomplishment of our mission and purpose. Those in the PKU community who share the NPKUA's goals but are not members of the NPKUA may participate on committees and attend the Annual Conference.

Why are the organizations who want to join the NPKUA required to donate 75% of their “non-designated funds” to the Alliance?

The NPKUA solves the dilemma of how best to allocate funds raised for PKU research through the Research Development and Review Committee (RDRC). The RDRC will be composed of independent doctors, clinicians, and scientists who will peer review research proposals.

What is the definition of the term non-designated funds?

Non-designated funds are funds that your organization raised for PKU research that have not been designated for a specific research purpose by the donor.

How did you determine the figure 75%?

The figure 75% demonstrates a commitment to the NPKUA to seek solutions for PKU issues through research. Contributing 75% of your organizations non-designated research funds will allow the NPKUA to make a real difference.

How exactly will the funds that our organization donates to NPKUA be used? Will 100% of our donated funds go to research?

The NPKUA will donate 100% of the funds you contribute to the research proposals recommended by the RDRC and approved by the NPKUA Board of Directors.

Will the NPKUA require that we pay dues separate from the 75% fund request? If yes, what is the due amount/payment schedule and what will the dues be used to fund?

No. No dues are to be paid by local organization members.

How did you determine the NPKUA start up budget of $375K for two years?

A preliminary budget was derived after consultation with other national organizations for orphan diseases. This figure also includes funding specific PKU programs to accomplish the NPKUA’s mission and purposes.

How will you fund future operational costs?

The NPKUA will pursue funding from relevant foundations and Government agencies, individuals, fundraiser events, and companies within the PKU community.

Who will pay for our organization members to attend the NPKUA Board Meetings and Annual Conference?

The Annual Board Meeting will be held at the NPKUA Annual Conference. The requested attendance of two organization members to attend the NPKUA Annual Conference should be sponsored by the local organization. The NPKUA will endeavor to find sponsors to cover part of the expenses of attending this Annual Conference.

The Membership Agreement states that a member (i.e., organization) needs to provide information to NPKUA as requested and send out information provided to it by the NPKUA. What type of information are you referring to?

This statement is to assure that the organization will work with NPKUA to accomplish the Alliance’s mission and purpose by providing the Alliance with all relevant information. The NPKUA will not request any confidential information. Examples include sharing information about local fundraising events so that the Alliance can post it on the web site to increase awareness and ultimately the funds collected at the event or for the organization to distribute fliers that may include information about an Alliance event to the organization’s members/local community.

What if my organization disagrees with where the Alliance determines the research funds should be allocated to?

Each local organization will have representation on the NPKUA Board and through that representation can influence where and how the research funds are allocated.

How will the Alliance assist in the development of new PKU orgs?

The NPKUA will provide free local assistance to help in the creation of new local PKU organizations.

Will a member of the NPKUA participate in a meeting of my organization to answer questions we might have?

Yes. If you would like a member of the NPKUA Board of Directors to participate in a meeting, please send an email to: Administrator@NPKUA.org

What if I have other questions?

Please send any additional questions you might have to: Administrator@NPKUA.org