News
Sept 2025
News for September 2025: PKU App now free, More help for long-term conditions, New PKU podcast, Four new recipe sites to try - and much more. Subscribe today for free.
Latest
News
Falling Forward
Ian had no idea how much that first marathon would change his life. He had only ever intended to run a single marathon. Until Sharon challenged him to run one in under 4 hours. So they signed up for another marathon, and then another.
Recipes
Fennel and orange salad
An easy, no-cook, low-protein salad which is 1g protein per portion. This recipe serves two as a main or four as a side salad. Protein-free option provided. Needs one hour to marinate.
Brain Injury
Endurance training with PKU & brain injury
Living with PKU means juggling the restrictions of a low-protein diet therapy with the demands of every day metabolism. Throwing in an endurance challenge means I need to double-down on ensuring I’m getting enough energy and nutrition without exceeding my protein limit.
News
July 2025
July 2025 news: Men's voices in healthcare, EU approves new PKU treatment, New Books for PKU kids, & Neuroplasticity in brain injury recovery.
News
372 Miles for PKU
It’s a stretch of tarmac, and trail most of us only see through a windscreen—yet Ian will cover every metre on foot to raise money for NSPKU (Phenylketonuria)
News
June 2025
First CRISPR treatment for a rare genetic disease, Cost of brain injury to the economy, Low-Protein recipe of the month, and much more...
Advocacy
Rare Creatives’ Lives
Catch up on YouTube: "Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts". All guest creatives have PKU in the family:
Recipes
Low-protein Waldorf Salad
An easy, & PKU-friendly Waldorf salad for a quick, healthy lunch. 1g protein / 1 phe in the UK. I use pine nuts for the protein as you get more 'nuts' per serving.
The Memory: we that are left
A short story in memory of those who fought, released freely on the 80th anniversary of VE Day. From "The Red Hat Stories" by Pauline O'Connor.
News
May 2025
Could you walk 24 miles (39 km) in one day? Or try a different challenge this PKU awareness month. Plus, a low-protein recipe, and brain injury on stage.
News
April 2025
Packed with Easter tips, ideas for school holiday baking, new brain injury research, and a chance to report on the NSPKU conference.