When the National PKU Alliance was formed in 2008, everyone agreed that there is a powerful, partially untapped community of dedicated grandparents throughout the United States wanting and willing to get involved and help further the causes of  PKU.  Many have already made heroic efforts throughout the years in the fields of research, fund raising, education and support for families.  A new story will be told each month in the “Grand Stories” section of this website.

The leaders of NPKUA asked Sharon Johnstone (grandmother of Charley, age 11 and Bobby, age 8) and Kathy Piziali (grandmother of Tia, age 6) to spearhead an effort to reach out to all grandparents of PKU children and young adults.  We named it “Grand Power” because we feel as grandparents, we have a great deal of time, energy, love and POWER to help our PKU grandchildren.

The purpose of Grand Power is threefold:

• To identify a community of grandparents who want to get involved and be informed.

• To harness the time and talents of grandparents to help further the important efforts being made on behalf of NPKUA Committees and PKU Education.

• To create a structure and support for individual grandparents wanting to initiate Special Projects.

Please explore the website, let us know who YOU are, introduce us to your PKU grandchildren and choose ways in which you want to help! If you just want to register and receive information, that’s great too! Sign up here!