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Stronger Together: Uniting our flok

Stronger Together: Uniting our flok

Sarah Chamberlin Sarah Chamberlin

Community is essential to flok: it fundamentally drives our vision, learning, and success. We expanded our mission to serve the broader metabolic community because we see incredible value in inviting participation of all individuals and caregivers with inherited disorders of protein metabolism. flok’s increased scope now encompasses Classical Homocystinuria, Maple Syrup Urine Disease, Organic Acidemias, Phenylketonuria, Tyrosinemia, and Urea Cycle Disorders. Historically, those with PKU have had advantages among these disorders: PKU was the first condition identified through Newborn Screening and is the most common of these rare disorders. Resources like the Low Protein Food List, How Much Phe, and Cook for Love have long supported not only the PKU community, but others with similar conditions.  Building on this, flok has the unique opportunity to connect this larger community, with the intent to reshape the future of metabolic research and care for us all.

"When our daughter found out that "PKU Family Camp" was becoming flok camp, she said, 'that's nice, because instead of feeling like we are invited even though it's PKU camp, we feel like we belong, because it's for all of us.'" – Parent of a daughter with Maple Syrup Urine Disease

flok’s inclusive approach stems from the belief we are stronger in numbers. Despite managing diverse conditions, our community members share many of the same challenges, hopes, and unyielding commitment to improving quality of life. Broadening our community brings in new perspectives, connections, and opportunities to advance science together. To reinforce this diverse community, we strive for inclusivity and representation of each condition group in our programming, community offerings, and even on our board and staff.  Supporting and collaborating with organizations who serve all our conditions is vital: the more we work together, the more we can accomplish.

Let’s explore the commonalities among those with inherited disorders of protein metabolism, the value flok offers to its members, and what we hope to achieve in the future.

flok’s Wingspan: An Overview of Inherited Disorders of Protein Metabolism

Individuals with a condition under this umbrella carry a unique genetic mutation that causes a deficiency in enzymes needed to metabolize proteins in the body. More specifically, the body cannot break down a specific amino acid that comprises proteins. Some of the disorders have additional limitations in the ability to metabolize certain fats. 

These enzymatic deficiencies can result in accumulation of toxic metabolites in the body that cause a range of adverse health outcomes if left untreated, including but not limited to neurologic impairment and organ system damage. All conditions involve a protein-restricted diet and medical formula under guidance of a registered dietitian. Additionally, some conditions may require daily medications or supplements to assist with protein breakdown or reduce toxic wastes in the body.  

"I can't wait for flok - I'm ready to be looked at as a whole person, not just a bunch of random unconnected data points." - Adult with Homocystinuria 

Many of these conditions do not have published clinical treatment guidelines, and even when they do, there is significant variability across clinics and providers in treatment protocols and management of care. This lack of standardization illustrates the need for more data to guide individuals and their care teams.  

Early detection and treatment is critical to optimize health care outcomes for our community. Newborn screening plays a vital role in diagnosis and provides the opportunity to intervene before symptoms arise.  Dr. Robert Guthrie

At right: Dr. Robert Guthrie, Newborn Screening Pioneer and PKU News founding Board Member. Photo courtesy of the University of Buffalo Archives.

While these genetic disorders pose daily and lifelong challenges, you are not alone in facing them. Through flok’s app and community offerings, we endeavor to simplify daily health management, build a cache of clinical information to guide your metabolic care, and create opportunities to connect and advocate for yourselves.

Different Birds, Same Flight Path 

  • Simplify nutritional management: Finding, preparing, and tracking low-protein food can be difficult. The flok app features an extensive food database with protein and amino acid counts to digitally track and record your daily consumption. It also helps you locate nearby restaurants and grocery stores with low-protein options and includes Cook for Love recipes to craft your own tasty meals. 
  • Understand other factors in metabolic health: There are many aspects of life outside of diet that impact how we feel. The flok app includes features to track physical activity, mood, and sleep habits, among other factors, to help you better understand your health. These tools will make you the expert of your own care.

"We are excited about the new flok community and being able to track how diet, exercise and mood are all linked. This information will be so valuable to the metabolic community to enhance research as we discover more ways to treat rare disease.” – Parent of a son with Tyrosinemia Type 1

  • Advance research and treatment: These conditions are complex and deserve ongoing attention from the medical and research communities. We know there are more layers to condition management than diet and medication, and the flok app’s aggregation of diet, physical activity, mood, biometrics, and lab values builds a robust picture of life with these conditions. This patient-reported data will better inform metabolic teams serving our community and has the potential to influence the Food and Drug Administration’s consideration of patient experience in clinical trials and drug approvals.
  • Feel connected: flok offers a supportive community. We host flok Camps, online groups, and other events designed specifically for you. We aim to create opportunities for all members of our community to connect in shared experience, learn from one another, and feel seen.
  • Have a voice: We value your unique perspectives and needs as members of this community and aim for representation of all condition groups in our programming, events, and on our staff. flok is developing an advisory committee with voices from each condition group. We believe you deserve a seat at the table where decisions are made. 
  • Make a difference: Advocacy for our broader metabolic community is a core tenet of flok’s philosophy. Historically this included lobbying efforts for widespread and inclusive newborn screening and the Medical Nutrition Equity Act for expanded insurance coverage of specialty formula. The flok app’s collection of valuable health information also contributes to scientific advancement in research and treatment of our conditions. Improving life for members of this community is an ongoing journey, and you play an instrumental role in this work. 

Fly with flok 

Your participation and engagement will help us grow and flourish as one dynamic flok. Sign up today to receive ongoing communications about the flok app, community events and offerings, and our role in advancing care and treatment for the broader metabolic community. 

Graphic illustration of Uniting Disorders of Protein Metabolism based on Young A. A schema of the pathophysiology of the inborn errors of metabolism. Web site. Updated 2019. Accessed 11/6/2023.

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