Education Member Families

The understanding of the developments with PKU and coping with the issues of the diet are critical for our families. On a quarterly basis, we publish a newsletter, The PKU Press, which serves as a forum for the exchange of new information, ideas, recipes and encouragement. Additionally, the Organization sponsors PKU cooking schools to better enable families to offer more variety and flavor while complying with the diet.

Support for Member Families

It is critical that our families do not feel they are alone with this PKU challenge. Therefore, we offer a wide variety of support and networking services for them. The include:

• Get-togethers for PKU kids and parents to express their concerns and share ways of coping with the disease
• New member support groups for PKU families to provide an immediate network of support and sharing
• Annual picnics throughout the state and family camp to get to know other PKU families
• Publishing of parent directory of all members in order to facilitate sharing and caring
• An annual meeting which has attracted national attention for the quality of its presentations on PKU research and treatment
• Activity on both state and national levels in protecting the interests of PKU families

Funding for PKU Research

The PKU Organization of Illinois is committed to the support of appropriate research initiatives to better understand PKU and eventually find a cure. Research initiative such as the Maternal PKU Project and Gene Therapy projects are supported and followed by the Organization.