Camp 2020

Metabolic Camp Experience

The Annual Metabolic Camp (Metcamp) was created in 1995 by Rani H. Singh, PhD, RD to help young women with PKU, MSUD, and other Inherited Metabolic Disorders (IMDs) improve quality of life as they transition from childhood to adulthood. Metcamp is a research-based metabolic camp with focus on Maternal PKU Syndrome (MPKUS). Metcamp’s vision is to optimize Medical Nutrition Therapy (MNT) and pregnancy outcomes of females with Inherited Metabolic Disorders (IMDs), arrest the disease process, and minimize the instances of Maternal PKU Syndrome, miscarriages, and severe birth defects. Metcamp achieves this vision by providing a supportive environment for girls and women with PKU, MSUD, and other IMDs to learn about the impact of nutrition and diet self-management on health and birth outcomes, while advancing research and training in the field. Camp not only provides opportunity for patients to learn, but also for clinicians to gain professional knowledge for treatment of inherited metabolic disorders. Due to COVID-19, the 26th Annual Metabolic Camp took place as virtual camp, called Metabolic eCamp, on June 24-26, 2020.

eCamp Methodology

eCamp was held virtually via HIPAA compliant activities. Oversight was given by trained Registered Dietitians (RDs) and other providers who served as counselors and assistant counselors. Similar to in-person Metcamp in previous years, staff meetings were held daily to plan and reflect on each camp day. With guidance from our technology collaborators/consultants, the following tools were utilized to facilitate our virtual camp:

  • MetCamp website with secure, password-protected participant page
  • Zoom (videoconference platform used to present virtual camp)
  • Existing MNT4P data and survey platform
  • REDCap (virtual data collection)
  • Communication via email and text messages

Interactive large group classes, small group activities, and nutrition counseling sessions presented Metabolic Camp’s holistic approach to MNT of IMDs:

  • Latest therapies for PKU, MSUD, & HT-1
  • Maternal PKU & Maternal IMDs
  • Food shopping
  • Cooking demonstrations
  • Wellness (mindfulness & meditation)

Previous camp attendees were invited to present and discuss their MPKU pregnancy experiences. These stories highlight the importance of education and social support to improve adherence and long-term outcomes.

Diet records and dried blood spot filter papers (PHE/LEU blood levels) were collected and analyzed to measure the impact of educational intervention on patients.

Typical Day

11:00am-11:25am EST Welcome
11:30am-12:15pm EST Activity Groups
12:20pm-12:45pm EST Virtual Exhibit
12:50pm-1:40pm EST Group Class
1:45pm-2:25pm EST Nutrition Counseling Session
2:30pm-2:55pm EST Virtual Exhibit
3:00pm-3:25pm EST Group Class
3:30pm-4:00pm EST Patient Story |
Daily Recap | Closing

Sample Cooking Class Recipes

Camp Teaching Focus

Metabolic Camp focuses on lifelong MNT of IMDs, new PKU and IMD therapies, treatment adherence, transitioning care, MPKU featuring stories from PKU moms for campers, reproductive choices, and pregnancy planning.

Camper Demographics

This year’s camp welcomed a variety of girls and young women from 16 states and Argentina.

Camper Feedback and Satisfaction

RDs learned about campers’ barriers to adherence in camp setting that are not often revealed in clinic setting. In addition, 25 campers responded to a post-camp survey to provide formal feedback