How Much Phe News

The flok app Open Beta is now available to everyone in the US. Download the app here. 

• Track diet, moods, symptoms, labs and much more.
• The flok app will replace How Much Phe in mid-2025
• The flok app is free to download and use.
• We're working on features to import your favorites, custom foods, and user-created recipes from HMP to flok. You will have access to HMP until this process is complete. In the meantime, download the app and start exploring. If you're a caregiver, create your own account first and then add profiles for others. 
• There's an FAQ for HMP users here.

Questions? Contact [email protected].

An exciting transformation is underway - we're excited to share the details. Read more here and sign up for updates at flok.org.

Looking for ways to celebrate? You can add a frame to your Facebook Profile, share (or donate to) our fundraiser, or make a gift online!

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HCU Network America and PKU News are hosting an online Back to School Low Protein Chat Wednesday 8/19/2020 at 7pm CST.

Panel Details:
Overview:Starting school can create a lot of anxiety, not just for students, but also for parents of children who require a low protein diet. We may ask ourselves "how will they get their formula in?", "how will we manage the low protein diet?", "My child has learning issues related to their disorder, how will the school manage?", "Is it even safe for my child to attend school with COVID?"
Date:Wednesday 8/19/2020, 8pm Eastern/7pm Central/6pm Mountain/5pm Pacific
Moderators/hosts:Danae' Bartke and Sarah Chamberlin
Register here: http://pheed.me/btslowpro2020

Panelists:

• Cary Harding (MD) - COVID impact on IMD and other IMD genetics concerns
  
• Benjamin Goodlett (PhD) - Cognitive and social aspects in Education
  
• Jennifer Beazer (RDN) - Diet Management in school
  
• Pamela Kowalczyk - Special Education teacher - 504 and IEP accommodations
  
• Lynn Paolella (Cambrooke) - School Lunch Program
  
• Brenda Winarski (Cook for Love) - Brown Baggin' it, Low Protein Lunches
  

How Much Phe (HMP) is considering a collaboration with the PKU Registry* to allow users to share blood-phe levels entered into HMP with their registry profile. The first step is seeing how many people are already members of the registry, and how many would be interested in this project. Please select one of the options below. Thank you!

• I am a member of the PKU Registry and I'd be interested in adding my blood-phe levels to the registry through HMP
• I am a member of the PKU Registry and I would NOT be interested in this integration
• I am not a member of the PKU Registry, but I'd like more information
• I am not interested in enrolling in the PKU Registry

*The PKU Registry is a web-based research initiative that allows people who are impacted by PKU to accelerate research by sharing their health data and ideas.It was launched in January 2017 through a collaboration between the National PKU Alliance (NPKUA) and the National Association for Rare Disorders (NORD) with support from the US Food and Drug Administration.

When we launched the new CookForLove.org last year, we announced that all recipes (from Brenda & other featured chefs) could be found by searching brand name "recipes." At the same time, the recipe values from the old Cook for Love site were still in the database. To eliminate confusion & make sure everyone is using the most updated values, we've removed those recipes with the brand name "Cook for Love (official)." Please search for brand name "recipes" and the recipe name to find all the recipes from CookForLove.org.

How Much Phe (HMP) users can now access the recipes on Cook for Love using their HMP email address & password. Any changes made to one account (password etc) will affect both sites. Enjoy!

National PKU News & HowMuchPhe.org has updated its privacy policy in accordance with the General Data Protection Regulation (GDPR) which goes into effect in the European Union on May 25, 2018. We have added a Data Privacy Policy Addendum to our terms and conditions, which you can review here. The GDPR governs only EU residents, but our goal is transparency and responsibility with your data, so we have voluntarily changed our policy to reflect that. You do not need to reconsent to the terms of use (TOU) as your subscription continues to be governed by them, but you may review the addendum here.

PKU News is a member of the Patients & Providers for Medical Nutrition Equity, a coalition working to pass the Medical Nutrition Equity Act, which would guarantee universal coverage for medical nutrition (food & formula) no matter what state you live in, or what your age, income, or insurance status is. We need your medical foods stories -- what medical nutrition costs, how much is covered, and what guaranteed coverage would mean to you and your family -- to share with the legislators. For every ten people who submit their stories before May 31, one person will get a discount card -- from $5 to a free year! Submit your story today at MedicalNutritionEquityFor.us. In the 'How Did You Hear' field, enter HMP to certify your entry for the contest.