Madam,

Many will know that I am a Phenylketonuria (PkU) patient, which is a rare genetic condition that only one in 10,000 people in the UK are diagnosed with.

I just wanted to write to thank everyone for their continued support, including the Cambrian News.

Since the last load of fundraising, life has been busy. As well as fitting in full-time and overtime work, I’ve also been invited to London a few times to film for a documentary, So What Can You Eat?, as well as doing talks for a low-protein food manufacturer Cambrooke Therapeutics (UK).

Also I’ve travelled to Venice to do the same talk there for Cambrooke Therapeutics (UK and USA).

I would also like to thank Jonathan Kendall and family for supporting PKU awareness by inviting us to join a regular food and drink festival. This was a first for any PKU group and we’ve already agreed to do the same next year.

Over in the Venice conference, we learned that a home-testing kit for phenylalanine levels is being trialled, something which already exists for diabetics.

This highlights how far behind PKU care is.

However, thank you to the staff at Tywyn Health Centre. They are doing the best they can with the resources they have. After listening to a story of somebody living in Moldova, it hits home as to how lucky we are here in the UK.

With Christmas not too far away, I would like to wish everyone a very Merry Christmas and a Happy New Year!

Thank you all for your continued support.

Yours etc,

Mark Edwards, Tywyn.

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