The Minnesota PKU Foundation is a member organization of the National PKU Alliance (NPKUA). It is an exciting time in the PKU community when multiple organizations are able to unite to make an impact on a national level.
The NPKUA held its first conference in Dallas, TX in January 2010 where new foods, formulas, and treatments were discussed. Parents and adults with PKU offered support and tips to others working with the challenges of PKU. New friends were made, and the fruits of different organizations were pooled to fund research to benefit those with PKU and hopefully eventually cure PKU. For more information about the conference and research, see the NPKUA web site at www.npkua.org.
NPKUA makes a push for federal PKU legislation!
The NPKUA is asking for your help in passing Federal PKU Legislation. Although Minnesota has coverage mandated, many Minnesota families find themselves without coverage because their employers are "self insured" and exempt from Minnesota State Law. The NPKUA has established "talking points" to help those who want to contact their representatives and help ensure Minnesota families are covered and help those in other states that aren't as fortunate. The proposed legislation would make sure that those that are employed by companies that are self insured do not fall outside of state law and would require medical food (formula) and low protein food coverage for all in the United States including those on federal plans (like tri-care). For up to date information regarding the bill check out the NPKUA web site at http://www.npkua.org/index.php/legislation
Are you a grandparent of a person with PKU?
Join GrandPower!
GrandPower is a movement by the NPKUA to utilize the talents and time of these valuable family members who are often already so involved in the lives, diet, and treatment of children and adults with PKU.
