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Partner Spotlight: NOTA

By Jodi Chiz
April 7, 2021

Partnering to Serve Families

Victory Junction has been partnering with the Network of Tyrosinemia Advocates (NOTA) since 2018. Our Partnership Director works with Jonathan Miller to coordinate a NOTA Family Camp at Victory Junction each fall.

Tyrosinemia is a genetic disorder characterized by elevated blood levels of the amino acid tyrosine, a building block of most proteins. Tyrosinemia is caused by the shortage (deficiency) of one of the enzymes required for the multistep process that breaks down tyrosine. If untreated, tyrosine and its byproducts build up in tissues and organs, which leads to serious medical problems.

Worldwide, Tyrosinemia type I affects about 1 in 100,000 individuals. Tyrosinemia type II occurs in fewer than 1 in 250,000 individuals worldwide. Tyrosinemia type III is very rare; only a few cases have been reported. Because of the intricacies of this diagnosis, NOTA works with Victory Junction (specifically our food services team) and their sponsors to create a family weekend that provides a very specific meal plan to accommodate the dietary needs of campers with Tyrosinemia.

Roasting marshmallows over campfire
Roasting marshmallows over the campfire at a NOTA family weekend.

Part of NOTA’s mission is that every parent knows that they are not alone in this struggle, and has the support they need at critical times. Our annual partnership with NOTA allows families to gather from all over the country and meet at Victory Junction to build and maintain a support network for this rare diagnosis. Through meal times, program areas, all camp activities, and even engaging with a variety of NOTA’s sponsors for the event, families and campers are all able to leave with a larger network to lean on for emotional, psychosocial, and even medical support as they return home.

We at Victory Junction have been honored to work with Jon over the last 3 years to continue providing this opportunity for the NOTA families, and have been thrilled to watch the partnership grow. We are looking forward to welcoming them back to camp in Fall 2021 to continue serving this population.