It’s Springtime and we’re getting closer to our Family Day in Bristol!

In this Navigator, you'll find:

  • An overview of our Family Day
  • Our final patient story
  • Getting involved through running
Following the success of our Manchester Family Day last October, we are busy planning the next one in Bristol on Sunday 21st May 2023. We hope this will be accessible to many of you, including those based in Wales and London. We keep hearing about the power of making connections, so this year’s theme is ‘Strengthening our Community’. The event is free to attend and all ages are welcome, with lunch included.  

This is an excellent networking opportunity for those with XLH and their families. Perhaps you have valued our series of Patient Stories? If so, come and meet some of the participants and ask them your questions. Given the popularity of the balloons in Manchester, we will be featuring balloons in the children's entertainment! There will also be some short, informative presentations from those with specialist knowledge of XLH and a break-out session called ‘XLH Connect’, where you can share your experience with others. 

 To read our event FAQs and to register, please go to Events – XLH UK 

Claire's story

If you follow us on social media, you’ll have seen the fourth in our series of Patient Stories. It is clear from the comments that the many of the patient stories resonate with those in our community, helping those with XLH to describe their XLH to family and friends. To see Claire’s story in full and see the other patient stories available, please visit 

Four generations of the Lewis family are living with XLH. By looking out for one another, the family members keep each other updated on the treatments available. As an adult living with XLH, Claire describes how Burosumab ‘feels like hope’ for the XLH community. Claire is an optimist about the advances in the treatment of XLH but believes that reluctance to fund the best joined-up care in Wales is short-sighted.  

XLH Help Hub
We often get asked how people can get involved and support our charity. A brilliant example of Fundraising for XLH UK comes from Jennie MclLmail. Read about preparations for a very special relay taking place at the Belfast Marathon
on Sunday 30 April 2023. 

This year, 30 members of BattleBorn Fitness NI are running relay teams in the Belfast Marathon 2023, raising money for XLH UK. We were so impressed by Jennie MclLmail and Amy Bickerstaff’s efforts, that we wanted to learn more about their motivations and how preparations are going. Below is Jennie’s story with some context from Amy, and some comments from JB, their coach.  

“In January of 2022 I joined a local fitness group, BattleBorn Fitness NI. Exercising is something that had always come with difficulties for me due to XLH [diagnosed aged 10], but it was quick to see after joining this group that I had the support of all the members behind me.”  

Despite her concerns around her running abilities, when the Belfast marathon relay teams were mentioned, Jennie decided to act on her biggest driver ‘to inspire both my XLH boys’ and signed up! She says that she felt able to play her part with the encouragement of everyone around her. 

Jennie's inspiration - Arthur and Ned 

“This fantastic group of people have been on a journey themselves, learning about XLH through following my son Ned’s participation in a clinical trial in London. Our coach Jonathan Birch [JB] had suggested a fundraiser for a charity of my choice - so the Belfast Marathon seemed a perfect opportunity to raise money & awareness for XLH UK. Once the charity had been announced the teams began to grow & we rapidly went from 10 participants to 30.” 

“I have been training three times per week since January & have built up to running 5k, which in itself, is a huge achievement.” 

Notes from JB, BattleBorn’s coach – “What a credit this young woman is!” 

As coach, JB sees it a privilege to meet and coach a variety of people with different backgrounds, abilities, and confidence levels. 

“In Jan 22 Jennie joined the group and from the start embraced whatever challenge I threw at her, (there were many). It was obvious to me from the start that Jennie had some physical obstacles to overcome, her never say die attitude and openness about her XLH condition took me on my own learning curve.” 

“Because of this I was only too happy to support BattleBorn's 'Member of the Year 2022' and her family by entering as many teams as possible in the Belfast Marathon relay 23. It is my hope that we not only raise money towards the charity but also awareness.”

XLH UK send our huge THANKS and GOOD LUCK wishes to all those taking part! 

There is still time to help support BattleBorn’s amazing fundraising by following this link 

Please send us your thoughts on how to best shape future newsletters by emailing the team at
XLH UK © 2022. Registered Charity (England and Wales) 1196811. This information should not serve as medical advice or instruction. Please always consult your healthcare professional in the first instance.

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XLH UK · 21 Providence Street · Greenhithe, DA9 9AA · United Kingdom

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