Kelly McDonald is the Advocacy Chair of the National PKU Alliance. The following article is based on her presentation:

The mission of the National PKU Alliance is to improve the lives of individuals and families with PKU through research, support, education and advocacy, while ultimately seeking a cure. Kelly spoke to our group about the need for concerned people to advocate for individuals with metabolic diseases, as it is only through advocacy that laws are changed.

The Genetic Information Nondiscrimination Act was signed into law in May 2008. It is the first legislative expansion of the Equal Employment Opportunity Commission since the passage of the Americans with Disabilities Act (ADA) in 1990. This law prohibits discrimination by health insurers and employers based on an individuals’ genetic information, including genetic testing and family medical history. It affirms that all people have the right to be judged according to their ability to do a job, not on stereotypical assumptions.

The Patient Protection and Affordable Care Act (PPACA) was signed into law on March 23, 2010. Children with pre-existing conditions can no longer be denied health insurance coverage. By July 2010, all Americans who are uninsurable because of a preexisting condition will have access to insurance through a state administered temporary high-risk pool, until the private health insurance exchanges are in place in 2014. Insurance companies will be banned from placing lifetime or annual limits on coverage or canceling coverage due to illness, and it allows parents to extend coverage for their children up to their 26th birthday.

The Medical Foods Equity Act (S.2766 and HR.4926) would mandate that ALL insurance companies must provide coverage for medical foods (including formula, foods modified to be low in protein), and equipment, over the course of a lifetime. The bill currently has 23 sponsors. Your help is needed to make sure this important legislation is passed.

Grassroots advocacy is essential to keep us moving forward. We are all urged to call and email our elected representatives, write letters-to-the-editor, and visit members of Congress. For more information on how you and everyone you know can help, go to:


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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