PKU news May 2024
A monthly selection of news and events related to Phenylketonuria (PKU).
PKU Awareness Month
May is PKU Awareness month and in the UK we are celebrating with the annual NSPKU conference (more on this below). PKU folk in the US are encouraged to participate in the NPKUA’s Move Your Pheet challenge — raising funds and heart rates in May.
It is important to remember that PKU doesn’t magically get easier in May, something which I reflected on in 2021 — PKU Awareness month 2021. But, this is a chance for us to find our community, as more people are sharing, online or in person, about their PKU.
NSPKU Conference
Rooms are booked, speakers being contacted, recipes are being tested, and excitement is building as the UK PKU world descends on an unsuspecting Warwickshire in mid-May. I’m excited to learn about the latest in PKU research, which I hope others share on the blog and socials asap. I’m also a little nervous as have been asked to chair a panel, I hope I can do justice to the panelists!
In preparation, I will clear some space for the legendary swag and product samples which the food companies generously offer. And have started a list of questions of my own (creatine supplements, Sepiapterin for adults…). I have also reformatted the PKU book and hope to offer that via Shopify soon. If you do have any books, I’d be thrilled to personalise and sign them for you at the conference!
If you are new, please say hullo, as I love to meet new faces. I’ll be in the cartoon dinosaur, or puffin t-shirt!
MSUK Clinic Visits & conference
Metabolic Support UK (MSUK) are a world-wide organisation for Inherited Metabolic Disorders (IMDs), including PKU. They are a small team who punch above their weight, and you may see them in the waiting room at your next clinic: their next visits are:
Evelina: Monday the 13th of May
GOSH: Thursday the 6th of June.
The MSUK will hold their conference from Friday 8th — Saturday 9th November, London. Not sure what to expect? See their previous events here!
PKU Activity weekend
NSPKU’s Edale Activity Weekend 5th – 7th July 2024. This weekend is open to children with PKU between the ages of 8 – 12 years.
The NSPKU arrange for experienced metabolic dieticians who lead the weekend supported, by other adults who care for children with PKU and young adult volunteers who have PKU themselves and who attended Edale when they were children.
The weekend includes a wide selection of activities: - mountaineering, raft building, weaselling (going under big boulders), abseiling, canoeing, leap of faith, archery, assault course… This is a fantastic opportunity for children to have a great weekend, mixing with other children who also have PKU and making lasting friendships. Please email info@nspku.org for more details or booking.
On the socials
PCU Blogue
Looking for a massive online resource with recipe & product ideas, managing PKU and fitness, and honesty about living with PKU? Check out Tristan’s blog at https://phenylcetonurie.ca/category/articles-in-english/. Tristan lives in Quebec, and writes about PKU in English and French (Québécois). His slick videos and thoughtful content are definitely worth a look. You can find out more about him here, and subscribe to his newsletter here.
PKU Awareness 2024
Will I manage a post about PKU every day in May? It is quite a challenge — here is the first one: https://pkutalk.com/@poconnor/112366596785695880
How will you contribute to PKU Awareness this month? Large or small, every little helps, and please let me know how you get on