PKU

Newsletter 8 - January

How a new perspective might help you in 2023. Another new PKU treatment(!), & helping with PKU research. Plus, 5 ways to wellbeing through kindness. (Jan 2023 newsletter)

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Campaign update at NSPKU2022.

Liz Twist MP spoke to the conference in her role as Chair of the All Party Parliamentary Group (APPG) for PKU. She began by extolling the difference which Sapropterin makes for those who respond, but she also acknowledged the need to work for those who do not respond.

Review: five Sphere flavours

Vitaflo Sphere have two new, and frankly delicious, flavours in their supplement range. I tried all five flavours in one day and took notes for you.

New book: Living with PKU

No one’s PKU is quite the same, yet we can support each other. I don’t pretend to have all the answers, but this book contains what I know from forty years of Living With PKU

Fad Diets & PKU

Lifestyle diets like veganuary yeild pros & cons for PKU As the prime month for dieting begins, please remember that the ability to chose what you eat, or avoid, is a privilege. Plant-based products help with PKU

What is PAL, or PEG-PAL or Pegvaliase or Palynziq?

PAL stands for Phenylalanine Ammonia Lyase, which is a common enzyme in many plant species. The name is similar to PAH because both of them break down phe.... This is why it has been developed as a treatment for people who can’t produce enough PAL — those of us with PKU.

Cheese Scones and tips

Tasty, fluffy, protein-free cheese scone recipe - with pictures and baking tips for people on Low Protein diets like PKU, Phenylketonuria.

What is GMP?

GMP is a cheese-derived protein which has exciting implications for the treatment of PKU (tasty supplements!). Find out more on PigPen.page

New Chocolate Sphere

What is a GMP substitute? If you haven’t heard of GMP substitutes before, here is a quick primer. Vitaflo Sphere background The Vitaflo Sphere has been available in the UK for more than 18 months and comes in sachets of either 15g or 20g protein equivalents.