About

Metabolic Camp Videos

Emory Metabolic Camp helps young women take charge of their lives
Moms and future moms with rare inherited disorder aim for healthy babies

Faculty & Staff

Rani H. Singh, PhD, RD, LD
Professor/Camp Director
Rosalynn Blair, MA
Senior Program Coordinator/Assistant Camp Director
Kristen M. Narlow, MS, RD, LD, CC
Metabolic Dietitian/Camp Chef

History

The inspiration for Camp came from metabolic dietitian Dr. Rani Singh, when she noticed that, especially during adolescence, patients and their families struggled with the impact of growing independence and changing lifestyle needs on patients’ ability to meet their diet prescriptions and maintain their treatment goals. Dr. Singh and her team wanted to equip girls and young women to independently manage their diet and to improve their compliance. It was clear that disease and diet education programs need to be re-evaluated, improving sensitivity to the concerns of the young adult and their growing independence. In addition, there was an urgent need for programs educating young girls with PKU about the effects of high Phe levels during pregnancy and the potential impact on a growing fetus (maternal PKU syndrome). Thus, Metabolic Camp was started in 1995 with the assistance of Nicole Guerrero, graduate student, and a generous seed donation from the Handler family.

Purpose

Metabolic Camp offers a holistic approach to the nutrition management of PKU and MSUD–empowering females ages 12 and older to make healthy choices and take charge of their futures as they live, learn, and play in a supportive camp environment. Our model research-based camp, with a focus on maternal PKU, has been supporting adolescent girls and young women for more than two decades.

Camp Goals

To teach the importance of nutrition and to help campers develop diet self-management skills.
To review the treatment recommendations for PKU and MSUD prior to and during pregnancy.
To create a place to share experiences and make new friends with other young women who have PKU or MSUD.
To research the impact of the above interventions on the transition to adulthood, pregnancy, quality of life, and overall health outcomes.

Research Information

A unique feature of Metabolic Camp is its research component. Because Emory University is a research institution, the Camp is in an ideal setting to conduct research studies for young women with PKU and MSUD. All clinical research done during Metabolic Camp is focused on the interventions related to the transition to adulthood, pregnancy, quality of life, and overall health outcomes.

For example, we have conducted research that supports:

How the special diets of individuals with PKU and MSUD affect the body and brain
Changes in bone health
Identifying biomarkers for monitoring Phe levels in the clinic
Optimizing test devices for monitoring Phe levels at home

Participating in research is optional for all Camp attendees. Campers may choose which research components they would like to participate in (or not) by completing the Informed Consent and HIPAA Authorization Form that is provided in the Camper Packet. All campers are expected to complete a phone consent with the Camp Research Coordinator so that the research can be explained and any questions can be answered. A phone consent must be completed by all campers, even if the camper chooses not to participate in research.

Partners:

FAQs

FAQs:

I’m in the early stages of planning a pregnancy. Is it too late for me to come to camp?

No, it is a great time for you to come to Camp. Structured low-protein meals, diet education, and monitoring your plasma phenylalanine will help prepare you for getting focused and on track to have an in-control pregnancy.

Is this camp only for girls who want to get pregnant? I don’t think I’ll be planning a pregnancy anytime soon.

This camp is open to all young women with PKU and MSUD, not just those who want to plan a pregnancy. Staying in good control of your diet is important at every stage of your life, and Metabolic Camp is here to provide you with the tools to help you manage your PKU or MSUD.

I’ve never been around any other girls who have PKU or MSUD. I am shy and don’t like talking about my diet or disorder. Would I fit in okay at camp?

One of the primary goals of Metabolic Camp is to provide social support and empower our campers to take ownership of their disorder. For the entire week you will be surrounded by peers, dietitians, and other camp staff who create a supportive and understanding environment to learn and grow while creating lasting friendships.

I have been in great control of my diet for most of my life and don’t feel like I need this camp to “get back on track”. Would I still benefit from coming to camp?

Part of the social support aspect of Metabolic Camp is to provide mentorship and peer-to-peer support. Having experienced young women who are in good control is helpful for other campers who may be struggling to stay on diet.

I don’t normally like the taste of low-protein foods so I don’t eat them much. Will this be my only option for food while I’m at camp?

All of the camper meals are prepared with both low-protein modified foods (LPMF) and foods that are naturally low in protein like fruits and vegetables. Our camp chef prepares traditional meals with a combination of these ingredients – so you will have the opportunity to try lots of new things throughout the week. If there are meals that you don’t like, the kitchen staff and your counselor can help to prepare meals that you will enjoy.

What is the benefit of participating in research at camp?

When you choose to participate in research at camp, you are not only gaining new knowledge about yourself, but also contributing to the future of treatment and management strategies for PKU and MSUD. Research that is done now will benefit future generations as well as you as you get older with new monitoring methods, foods and formulas, and ways of understanding the natural history of these disorders.