Ryan's Half Marathon for PTEN UK and Ireland Patient Group

Ryan Thomas is raising money for PTEN UK and Ireland Patient Group

Royal Parks Half Marathon 2025 · 12 October 2025 · Start fundraising for this event

The patient group’s purpose is to improve the lives of patients, parents and carers who are affected by PTEN genetic alterations through better patient support, increased awareness, earlier diagnosis and intervention, greater research in to treatment and prevention and improved coordination of care.

Story

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https://youtu.be/fFvzPglYwNg?si=VEvfs4--bZt-wHAZ

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Since birth Ralph has had constant hospital appointments, scans and tests. Ralph was diagnosed with PTEN syndrome in August 2024 when he was 1 years old. It is not something that any of us had ever heard of, including his doctors.

Most of us have no idea we even have 2 copies of the PTEN gene. When both of your PTEN genes are working well they prevent your body from developing abnormal growths. When one or both is faulty, your body is likely to grow tumours (both cancerous and benign), leading to a very high lifetime cancer risk. Ralph will continue to undergo regular screening for the various forms of cancer.

Ralph was born with macrocephaly and since birth has had the most incredible care with doctors constantly monitoring him and supporting us all. Ralph’s immune system is so heavily impacted by this condition that over the last six months Ralph has had 9 hospital stays ranging from 3 nights to most recently over 2 weeks. He often requires intensive support and oxygen during these stays. He has constant appointments across the country and multiple pending operations. These are the just some of the ways that Ralph is currently impacted by this syndrome.

There is so little known about PTEN syndrome as it is incredibly rare, but we are learning constantly along with the professionals and hopefully by raising awareness of the condition people will learn about some of the hundreds of unknown rare diseases.

We know this is the beginning of our journey as a family with the PTEN foundation. By running this and challenging myself I not only hope to raise money for this foundation but also awareness of the challenges Ralph and other people with PTEN are facing on a daily basis.

I really appreciate anything you are able to donate to help this brilliant foundation. However, if you are unable to, please can you share this page to raise awareness.

Thank you so much!

Ryan, Bea, Seb and Ralph

Donation summary

Total
£4,335.00
+ £863.21 Gift Aid
Online
£4,335.00
Offline
£0.00

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