News Release: Emory Healthcare

Jun. 1,  2011

Lemonade and Loose Change: Patients Step Up to Support Emory's Metabolic Genetics and Nutrition Program

News Article Image(L to R) Anna Vanags, a school friend and Joe Vanags raise funds for PKU research and programs

When her son was just six days old, Kristen Vanags received news that no new parent wants to hear. Her son had tested positive for phenylketonuria (PKU), a lifelong metabolic disorder that all newborns are automatically screened for in their first days of life.

Though rare, affecting one in every 10,000 to 15,000 newborns, PKU can cause developmental delays, behavior problems and mental retardation if left untreated.

With the treatment her son receives at Emory's Metabolic Genetics and Nutrition Program, her initial feelings of worry have now turned to pride. Her now four-year-old son, his older sister and several other children affected by PKU have raised money through local lemonade stands and a loose change drive at an elementary school to support critical PKU research and community programs.

"We're so proud these kids," says Vanags, a resident of DeKalb County. "Their goal is to help raise money to support other families living with PKU. It is great to see them excited to advocate for themselves and educate others. A lemonade stand might seem like a small gesture, but events like these do a phenomenal job in raising awareness and instilling a strong sense of pride in the kids for making something happen."

Metabolic disorders affect how the body processes food into energy. People with PKU cannot process a part of a protein called phenylalanine, which is present in most foods; therefore, patients must adhere to a strict low-protein diet that includes specially formulated foods and drinks, which are extremely expensive. In fact, the average annual cost of medically necessary formula and food for PKU is $7,000 per year, more than five times the cost of feeding the average three to five year old according to the Center for Nutrition Policy and Promotion.

"A diagnosis of PKU or any inherited metabolic disorder after a positive newborn screening can seem totally overwhelming for families, especially because their child is very young and will require lifelong attention to their diet and development," says Rani H. Singh, PhD, RD, the director of Emory's Metabolic Genetics and Nutrition Program. "Knowing young children are working hard to raise funds energizes my passion to research optimal diet and alternative therapies for these rare disorders."

The Metabolic Genetics and Nutrition Program team consists of a metabolic nutritionist, a research nurse, registered dieticians and program support staff who work with clinical geneticists, genetic counselors and a social worker under the division of medical genetics. In addition to evaluating and managing both children and adults with metabolic disorders, the program also provides a store at Emory where patients can purchase modified low-protein foods. Each year, the program is responsible for the treatment and management of more than 500 children with metabolic disorders. 

The program also establishes community bonds among patients by providing a research-based nutrition education summer camp created especially for young women with metabolic disorders. In addition, three mothers of children who are treated for PKU at Emory founded Georgia PKU Connect, a network of support for families managing PKU.

"I feel positive about my son's future, especially with the support and guidance from the Emory genetics team," says Vanags, one of the founders of Georgia PKU Connect says. "We have a long way to go to ensure all children, teens and adults have the tools and support to manage PKU, but we are getting there. By working together, we can improve the lives of those affected by PKU."

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The Robert W. Woodruff Health Sciences Center of Emory University is an academic health science and service center focused on missions of teaching, research, health care and public service.

Learn more about Emory’s health sciences:
Blog: http://emoryhealthblog.com
Twitter: @emoryhealthsci
Web: http://emoryhealthsciences.org

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