Funded Projects

Plain Community Low Protein Cookbook

Project Year

2022

City & State

La Farge, Wisconsin

Program Name

CATCH Implementation

Topic

Culturally Effective Care

Program Description

The Amish and Mennonite (collectively known as “Plain”) communities are a religious group of over 376,000 individuals located throughout the United States. Plain communities are largely uninsured for religious regions and have a higher frequency of several genetic disorders, including metabolic disorders such as maple syrup urine disease (MSUD), phenylketonuria (PKU), propionic acidemia (PA), and glutaric acidemia type 1 (GA1). If untreated, these disorders cause severe disability and/or untimely death. With treatment, however, affected individuals lead healthy lives. The Center for Special Children (CSC) is non-profit, rural program in Wisconsin established with deep support from the Plain communities to care for uninsured children with genetic disorders. Approximately 200 children with metabolic disorders are treated at our clinic or at similar clinics in Indiana, Ohio, Pennsylvania, Delaware, and Kentucky. Treatment of metabolic disorders often involves lifelong use of specialized metabolic formulas in addition to a carefully selected diet limited in protein. Restrictions on protein intake are often significant and require separate dishes, desserts, and pantry items such as breads, noodles, and baking mixes. Families depend heavily on low protein recipes as they prepare foods for their child with a metabolic disorder. Most families from the Plain community do not utilize the internet for religious reasons and do not have access to low-protein recipes available online. Currently available printed low-protein cookbooks often utilize commercially available mixes or other food products that are cost-prohibitive. Many families have developed community recipes for low-protein foods, but distribution is limited by word of mouth or mail. The CSC is partnering with the aforementioned clinics to create a community-style low protein cookbook. The book will contain educational components such as an introduction to the various types of metabolic disorders seen in the Plain community, fundamentals of a low protein diet, and guidance for introducing solid foods to an infant with a metabolic disorder. The book will include practical tips for batch baking, packing lunches, freezing foods, and stocking the pantry. Recipes will be analyzed for specific nutrients that are closely tracked by families and content per serving will be included with each recipe. Families will also submit stories, quotes, or other items of encouragement to include in the book. Content and format will be reviewed by Plain community member focus groups to ensure the information is helpful and presented in a culturally appropriate way. We envision this cookbook being a valuable resource and support for families with metabolic disorders, community members, and those who are learning about a diagnosis for the first time. We are currently soliciting low-protein recipes via partnering clinic newsletters and family newsletters. The first phase of our project is funded and allows for the development of this cookbook and printing of up to 200 copies, depending on final cost of printing. While this phase could produce up to one copy of the book for each active metabolic patient from the Plain community, it leaves several unmet needs. Many individuals outside of the patient’s immediate family prepare low-protein foods for these children when they attend family gatherings, church services, benefit auctions, and youth events. Each year, many new infants are born with metabolic disorders and additional families will need this valuable resource. In this application, we request funding for a second phase of the project to provide additional copies of the cookbook for grandparents, care givers, and community members as well as future children with metabolic disorders from the Plain community.

Project Goal

Develop an educational and culturally appropriate low-protein cookbook for Plain families with metabolic disorders

Project Objective 1

CSC and Waisman staff will collect at least 100 low protein recipes from the Plain community by June 2022 via clinic and family newsletter announcements and written recipe submission by mail.

Project Objective 2

Nutrition assistants will conduct nutrient analysis (protein, leucine, and phenylalanine content for each serving) on all submitted low protein recipes by September 2022.

Project Objective 3

Dr. Williams and supervising metabolic dietitian will write the educational content (introduction to metabolic disorders, basics of low-protein diets, guidance for introducing solid foods, packing lunches/snacks, sick day favorites, batch baking, freezing, and pantry staples) for the cookbook by September 2022.

AAP District

District VI

Institutional Name

Center for Special Children- VMH La Farge Clinic

Contact 1

Katie Williams