Highlights
About MNT4P Video
This video outlines the services available through the MNT4P program for the benefit of Georgia patients with inherited metabolic disorders, their family members, and their healthcare providers. The video tells the story of MNT4P, from its creation and those who helped along the way to make it possible, to the impact it’s had on the inherited metabolic disorders community in Georgia thus far.
Medical Nutrition Equity Act
The National PKU Alliance has developed a patient advocacy video to help support the Medical Nutrition Equity Act (MNEA) which is currently awaiting approval from Congress. The bill has bi-partisan support and its passing would change the lives of many families living with inherited metabolic disorders by mandating coverage of medical foods and low-protein modified foods.
Closing the Loophole
Created in 2012, this video features the stories of multiple families from the Emory Department of Human Genetics whose children are on medical foods diets. Though the bill discussed in this video did not pass at the time, it provides a preface for the Medical Nutrition Equity Act, which is currently moving through Congress.
Raising Christopher
This news article details the story of Christopher, a young boy with Long-Chain 3 Hydroxyacyl-CoA Dehydrogenase Deficiency, or LCHADD. Christopher’s story tells the importance of research, empowerment, and advocacy on the success of the treatment for inborn errors of metabolism, such as LCHADD.
Metabolic Camp
In 2015, Emory University held its 21st annual summer Metabolic Camp for young women with inherited metabolic disorders, including phenylketonuria (PKU) and maple syrup urine disease (MSUD). The research-based camp helps adolescent girls and young women learn to take over the lifelong responsibility for managing their own diets and health. Educational programs are interspersed with traditional camp activities.
Maternal PKU and Camp 2017
This video describes the impact of Emory Metabolic Camp on two women who have had and/or are preparing for successful pregnancies. Maternal PKU Syndrome affects babies who are born with fetal abnormalities and birth defects as a result of an expecting mother with PKU who has excessive phenylalanine levels in her blood.