Welcome to the National PKU Alliance
NewsThe NPKUA Board of Directors, consisting of appointed representatives of each of the current member organizations, held its first meeting on Sunday, June 22nd. Completed minutes of the meeting are available here. Among other business, the Board elected the following NPKUA Officers: The Board also appointed several Committees to take on the important work of moving the priorities of the NPKUA forward. The NPKUA Committees include: - Research & Development Review
- Funding
- Public Relations
- Membership
- Personnel
- Advocacy
Anyone can participate in an NPKUA Committee - even if you are not a member! If you are interested in working on one of the Committees of the NPKUA please email us to let us know! The other big news is that at the meeting, the Board agreed to immediately and officially launch the NPKUA! This will be heralded through a press release that was distributed on Tuesday, June 24th.
In less than a year the NPKUA has gone from a blank piece of paper to a fully formed, funded, and operational national organization for everyone in the PKU community. That is a huge accomplishment that is attributable to the hard work and dedication of the many members of the National PKU Organization Charter Committee. We thank everyone who took part in that process and got us to where we are today. It is an exciting time and there is much to do. But we are established and now well on our way! 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. PurposeThe 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. Next StepsWe are reaching out now to the local PKU organizations to get them copies of the NPKUA by-laws and the Membership Agreement. We are accepting member organizations now, with some already on-board. If your local organization has not yet been contacted, please send an email to let us know and we will make sure you get the information you need.
Now that the NPKUA is operational, the Working Committees are recruiting members to help out. You can join an NPKUA committee even if your are not a member! All you need is a desire to help achieve our mission. If you are inteested in joining a Committee, please email us to let us know! |