NPKUA Committees

The NPKUA committees are made up of volunteers from the PKU community that assist with projects and take on responsibilities related to the committee. The NPKUA relies on these committees to offer additional support in key areas of the organization. Each committee has a chairperson that organizes volunteers, targets goals, and schedules/runs committee meetings.

If you are interested in participating in one of these committees, please contact the appropriate committee chair.

Advocacy Committee

Amy Oliver, Committee Chair

amy@go-ipad.org

This committee seeks to achieve the following: (a) enactment of PKU friendly legislation; (b) coverage by insurance companies for treatment; and (c) aligning with support groups for related metabolic disorders to promote common goals. Members to assist with our efforts through making phone calls, drafting advocacy materials and assisting with calls to action to the PKU community.   

 

Adult and Teen PKU Committee

Sarah Foster, Committee Co-Chair

pkuadult@aol.com

Annaliese Martinec, Committee Co-Chair

annaliesemm@gmail.com

This committee provides information and support for adults and teens living with PKU through the Adult and Teen PKU Program. This program provides a one-stop resource for adults and teens seeking to improve their quality of life.

 

Scientific Advisory Committee (SAC)

Mike Franklin, Committee Chair

franklin_michael_t@lilly.com

The SAC is made up of individuals whose goal is to promote advances in the treatment and management of Phenylketonuria, with the long term goal of facilitating the development of a cure. The SAC provides input on the direction of PKU research initiatives, assists with grant award programs and development of education/outreach, and contributes to PKU communications.

 

Fundraising and Membership Committee

Christine Brown, Executive Director

christine.brown@npkua.org

This committee has two main goals. The first goal is to raise funds for the organization for research, programming, and operations. The second goal is to promote and provide a unique benefit service to our members. Jointly, these goals provide annual revenue support for the organization. 

 

Publicity Committee

Katrina Swenson, Committee Chair

katrina.swenson@npkua.org

The Publicity Committee works to promote the NPKUA and raise awareness of PKU.  This is accomplished through many avenues, including mail, email, the website, social media, and more. Members will also ensure that messages use consistent language and brand standards.