We're well into floktober, which means PKU News has begun its transformation into flok, an organization with an expanded mission to advance care and research for inherited disorders of protein metabolism. Through community engagement, the flok app, and our data platform, flok’s expansion will support the broader metabolic community including caregivers and those who live with PKU, MSUD, Tyrosinemia, Homocystinuria, Organic Acidemias, and Urea Cycle Disorders. This inclusion will strengthen and mobilize us as one dynamic flok dedicated to scientific progress, improved quality of life, and the pursuit of joy that comes from true connectedness.
While flok’s organizational aim is wider, we maintain our commitment to serve the metabolic community in the ways you know and love, plus more. You can expect more of the incredible offerings that bind us as a community including:
- Family Camp
- Cook for Love recipes and events
- Scholarship opportunities
In addition, flok will launch a second in-person family camp in New Hampshire and offer the flok app to connect with others and aggregate important information about your diet, mood, and lifestyle to help our community and clinicians better understand daily life with these disorders. There are many fun opportunities to participate and fly with the flok. Let’s take a closer look at how you can join the movement.
In June of 2024 we will host our 21st annual in-person summer camp to celebrate the metabolic community in the rustic setting of Antelope, Oregon, and kickstart our first in-person fall camp in September on Lake Winnipesaukee, New Hampshire. Campers will experience three days of traditional camp activities and crafts, delicious low protein food, supportive and informational breakout sessions, and the opportunity to connect with others in shared experience.
We also will offer a one-day virtual camp to ensure equal access for those community members with travel barriers. Last year’s virtual camp attracted over 500 attendees from 10 different inborn errors of metabolism groups, hailing from 41 states and 7 countries. While the date for 2024 virtual camp has not been set, you can anticipate an even more diverse set of campers as flok expands its reach to the broader metabolic community.
- Kristen Vanags, flok’s Director of Community Engagement, brings over a decade of experience in co-directing PKU camp in the South, along with extensive advocacy for the broader metabolic community in the fields of newborn screening and genetics. She is excited to expand Family Camp’s reach and see new connections forged over the course of camp.
- Fall Family Camp in New Hampshire is located on Lake Winnipesaukee and features a new setting with expanded outdoor activities and requires less air and windshield time for East Coast attendees.
- Our approach to camp planning will use a multi-disorder lens to include more representation and content for the broader community of inborn errors of protein metabolism.
- Everyone is welcome at family camp. In addition, many adult members of our community have expressed a desire to have a specific forum just for them. And we're listening... stay tuned for more details!
While some offerings are new, campers can expect the same invigorating experience of connection with their allies in the metabolic community. Whether it’s trying a new craft, tasting a new recipe, learning from a researcher on Science Night, or mentoring a younger camper, attendees will gain something new and meaningful from camp.
Family Camp dates
- Oregon: May 30-June 2, 2024
- New Hampshire: Sept. 19-22, 2024
- Virtual: Stay tuned for more details!
Registration for Family Camp opens in early spring of 2024. You can sign up for the flok newsletter here to receive ongoing communications about how to register, sponsor, or volunteer.
Home to over 500 delicious low-protein recipes, Cook for Love serves as the culinary hub for individuals with inborn errors of protein metabolism.
Cook for Love began as a passion project for Brenda Winiarski after her newborn was diagnosed with PKU. Committed to making food that tasted good within the parameters of a low-protein diet, Brenda started a community-based recipe website to serve not only her daughter, but the broader metabolic community. Her project eventually merged with National PKU News and How Much Phe to maximize its impact. Equipped with accurate protein amounts and tasty dishes for every occasion, this recipe repository grew into a staple for those with inborn errors of protein metabolism. Whether it’s her easy-to-bake banana muffins or pizza dough, everyone has a favorite they can’t live without.
Cook for Love will continue to be an integral part of the flok community through cooking demos at Family Camp, virtual cooking tutorials, and ongoing development of new recipes for the Cook for Love website that will also be integrated into the flok app.
It's free to create an account and your taste buds will thank you. You can share photos of your recipe successes on the Cook for Love Facebook page, or even concoct your own low protein recipes to add to the website. Sign up here to start cooking.
At flok, we don’t believe you can just live with your condition, we believe you can thrive. This includes the pursuit of higher education and contribution to the broader metabolic community. Since its inception 23 years ago, our Guthrie-Koch Scholarship program has supported more than 100 individuals on their higher education journey. We recognize the personal challenges metabolic disorders present and the triumph of overcoming them to achieve an academic or career dream. Scholarship recipients demonstrate resilience, perseverance, and the ability to excel with an inborn error of protein metabolism. They serve as beacons of hope and inspiration to younger members of our community who may be at the beginning of their academic road.
The annual financial grants have historically been available to those with PKU in pursuit of post-secondary or vocational training. Ideal applicants have a proven track record of good character, academic excellence, and advocacy within the broader metabolic community.
As flok expands, we’ll look to engaging the broader range of inherited disorders of protein metabolism.
Applying for the scholarship is a great opportunity to showcase the hard work you've already done in school and for your community and continue your pursuit of higher education to make an impact. The application window opens in late October of 2023 and runs through February of 2024. Sign up for the flok newsletter here to learn about new scholarship and fellowship opportunities in the coming year.
Beta Test the flok app
flok’s innovative intersection of community, clinical data, and digital health has potential to alter the entire landscape of how metabolic disorders are researched and managed. You’re at the center of the change, as each member of this flok plays a pivotal role in driving the mission forward. Sign up for the flok beta app where you can track your diet, mood, and movement to manage your care and communicate accurate information to your care team.
Sign up for our newsletter to receive ongoing communications about testing the flok beta app, registering for camp, and engaging with our broader metabolic community. Click here to take flight with our flok.