History of Camp PHEver

In 1997, the UTHealth Genetics Division joined forces with the Texas Children’s Genetics Clinic/Baylor Genetics for the inaugural Camp PHEver, hosted at Camp Allen. This group of physicians, nurses, and dietitians set out to give kids with PKU the experience of camp. They created a place for kids with PKU to come together and create lifelong memories and friendships. The camp that started with only about 29 campers has grown to over 70 campers, with many graduated campers returning to become counselors and staff. In 1998, Camp PHEver found its home at the wonderful Camp For All in Burton, TX and has become an internationally known camp for kids with PKU.

Philosophy: To provide a camp that allows children with PKU and their siblings to enjoy a normal camp experience while maintaining the necessary diet restrictions.

Objective: To restore the self-esteem and confidence that children often lose because of their special dietary needs.

Camp For All: http://campforall.org/

 

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UT Health

The University of Texas Health Science Center (UTHealth), Department of Pediatrics, Division of Medical Genetics at the McGovern Medical School provides lifelong care for patients with genetically inherited disorders including Phenylketonuria (PKU).  In addition to providing routine patient care, UTHealth is actively involved in the latest research and works diligently to provide patients with the most current medical treatments. The McGovern Medical School produces 200+ medical doctors and trains over 1,000 residents each year. The UTHealth McGovern Medical School is located in the renowned Texas Medical Center, the largest medical complex in the world, in Houston, TX.

UTHealth homepage: https://www.uth.edu/

Genetics homepage: https://med.uth.edu/pediatrics/divisions/medical-genetics/

What Is Phenylketonuria (PKU)?

PKU is a genetically inherited, metabolic disorder which affects the enzyme that converts an amino acid called phenylalanine (PHE) into another amino acid called tyrosine. Amino acids are the building blocks that make up proteins. We ingest these amino acids when we eat food containing protein. Since people with PKU are not able to convert PHE into tyrosine, PHE builds up in their bloodstream. Too much PHE in the bloodstream can be toxic to the brain. This means people with PKU can eat too much PHE and be at risk for severe neurological complications including loss of IQ points, memory loss, concentration problems, mood disorders, and, in some cases, severe intellectual disability.

Brain damage caused by high PHE levels in the blood is irreversible, so PKU is screened for in the first few days of life and treatment is started immediately. The treatment includes a diet low in PHE or a low protein diet. The diet is supplemented with a phe-free or low-phe medical food product that provides many essential nutrients for the person with PKU. There is currently no cure for PKU, but there have been advances in pharmaceutical treatments and research is ongoing.

Camp PHEver Camp Details

Camp PHEver is an annual 6-day summer camp held in the month of July. It is for children ages 6-18 years old and is held at Camp For All in Burton, TX. The camp commences on a Sunday afternoon and concludes on the following Friday. The campers are divided into cabins based on age and gender, and each cabin is assigned two camp counselors who will assist in guiding the campers through their daily activities. Daily activities include, but are not limited to, swimming, arts and crafts, archery, ropes courses, petting zoo, nature walks, and so much more. Camp For All offers a 206-acre campsite including multiple facilities, two lakes, and tons of open space to run and play on.

Some favorite Camp PHEver events include water day, paint war, talent show, low protein cooking classes, and formula prep hour! Camp PHEver also has a unique menu selection process that allows campers to preselect their low protein menus, so meals can be provided to meet each camper’s specific protein (or PHE) needs. Each cabin will participate in a cooking class where campers will have a hands on experience cooking low protein meals. Additionally, campers will come together each day for formula prep where they will mix up their medical food product for the following day. Even though the primary goal of camp is for every camper to have fun, our campers do receive some indirect education about PKU.

PKU treatment and management is of the utmost importance to our camp counselors and staff. We take the health of our campers very seriously at Camp PHEver. We know that parents are entrusting the camp staff to maintain PKU management equal to what their child would receive at home, and so we strive to do this. We also obtain blood PHE levels taken at the beginning and end of camp and provide the results to the parents after camp.