Newsletter
May 2026
A bumper bank holiday edition: May brings local elections in the UK, find out about ID’s & accessible voting. Plus, updates from the NSPKU conference, help with research.
Conferences
Updates and latest research from PKU & brain injury conferences. Includes workshops, treatments, products and patient surveys. Phenylketonuria, low protein, concussion, post-concussion, brain bleed
PKU
NSPKU England 2026 conference
Updates from the NSPKU 2026 conference: Future PKU treatments (sepipapterin, kidney treatments), Home Blood Phe Monitoring, and research updates on Phenylketonuria.
News
January 2026
Resolutions: One thing at a time! Advice for managing PKU; Celebrities and 'brain holes'?; Please help with adult research; Dates for the diary; Plus: find ALL of my Low Protein recipes.
News
December 2025
From new breakthroughs to Christmas tips and recipes, here are the PKU and Brain stories worth knowing about in December 2025.
Conferences
NSPKU in Wales 2025
From the psychology of living with PKU to new treatment pathways and the fight for fair access, highlights from this year’s NSPKU Conference in Wales.
Advocacy
RareSummit 25
My first RARESummit: What I Learned from a Day of Rare Voices. CamRARE’s 2025 event reflected on “A decade of impact. A future of possibilities”.
PKU
What’s in the treatment pipeline
Insights from Prof. MacDonald’s talk at NSPKU 2025 — Sepiapterin, JNT-517, and more — and what they might mean for adults living with PKU.
PKU
News for Oct 2025
Developments in UK Pharma, and why they matter for those with PKU or brain conditions. Another new PKU treatment. Exciting developments in concussion detection - 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:
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.
News
March 2025
Spring news: new UK patient guides, updates on the NSPKU conference and activity weekend, plus insights into brain injury rehab. Also, my Low Phe ABC book is almost here! Read more & join the conversation.
Conferences
Metabolic Support UK
Similar to the NSPKU, MSUK was started by a family trying to find information about their child’s rare disease. However, MSUK encompasses all IMD’s, of which PKU is the most common