In November, we launched our Community Ambassador programme. We recruited 8 amazing Ambassadors, who are supporting the Inherited Metabolic Disorders community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.
In this blog post, we’d like you to meet our Ambassador, Chris Leaney!
Why did you want to become a Metabolic Support UK Community Ambassador?
I have Phenylketonuria (PKU) and had heard of the great work the team do for people with this condition and others.
How are you planning to raise awareness about the services Metabolic Support UK provide?
By using contacts I’ve made over the years in TV, radio and YouTube, to put on a large event each year.
Where is the strangest place you have raised awareness about Inherited Metabolic Disorders?
A small food festival in West Wales in August 2018, where I talked about living with PKU.
What’s the hardest thing about living, or living with someone, with an Inherited Metabolic Disorder?
Lack of understanding of the condition you have and constantly explaining all about it.
In the IMD community, who has had the greatest impact upon you?
Professor Heinz Wolff was my first PKU consultant at Great Ormond Street when I was born. He and Dr Mike Champion at Guys & St Thomas’ Hospital guided me.
What’s in your fridge?
A lot of vegetarian products and packs of Actimel.
Favourite comfort food?
As a child with PKU, potato was always my favourite food. As I am older, I love rice pudding – my go-to food!
Strictly Come Dancing, I’m a Celebrity, or Great British Bake Off?
This year, it was definitely Strictly, as a person I’ve worked with was on it.
What was the last film you watched?
It was Bohemian Rhapsody at the cinema, with the fantastic Rami Malek.
Caribbean beach or snow top mountains?
I’m a gold medal skier. So, I’ll go with a snow-covered mountain tops. Although, I do love St Lucia.
What would be a good theme song for your life?
“Let Me Entertain You” by Robbie Williams. At school, I was always the joker and I now love putting on big charity events, to entertain people.
Who do you follow on Twitter?
I follow sportsmen and women, actors and actresses, a lot of musicians and TV personalities I have worked with for other charities, and many YouTubers.
If you were given an extra hour today, how would you spend it?
With my son; he is my greatest achievement and I love being around him.
We look forward to hearing what events Chris organises in his new Ambassador role and thank you so much to Chris for helping us raise awareness of Inherited Metabolic Disorders. Your support is hugely appreciated.
If you live with PKU and would like to connect with Chris, please get in touch with Team Metabolic’s Julie on firstname.lastname@example.org