Welcome from our CEO
Dear all,
Welcome to Alport UK’s October round-up!
It’s been a busy and exciting few weeks for the Alport community.
The International Workshop on Alport Syndrome in Budapest is now behind us, and what a fantastic event it was! We’re already looking ahead to The International Workshop on Alport Syndrome in Brazil in 2027!
In this newsletter, we’ll share the latest news, community stories, fundraising activities from across Alport UK and some exciting research updates at the annual Kidney Week of the American Society of Nephrology (ASN).
Thank you for being part of our community and for your continued support.
Have a great November!
Susie
PS: Click on the icons below to follow us on social media!
Support
Silvia’s story: living with Alport in Spain
At The 2026 International Workshop on Alport Syndrome in Budapest (Hungary) this September, we shared a video of Silvia, who is a teacher, talking about living with Alport in Spain.
Personal stories like Silvia’s bring lived experience into the conversation alongside research and clinical care, reminding us why connecting across countries and listening to one another matters.
Thank you, Silvia, for sharing your story with the international Alport community.
Information
Celebrating Invisible Disabilities Week
During Invisible Disabilities Week from 19 to 23 October, we shared a reminder that someone can look well and still need support. People living with Alport may experience hearing loss, sight loss or chronic fatigue, and their needs may not be immediately apparent.
Listening, respecting those needs and allowing time to rest can make a difference.
Research
ASN Kidney Week 2026
Alport research took the stage at American Society of Nephrology (ASN) Kidney Week in Denver!
From understanding how common Alport may be to exploring genetic testing, clinical trials and potential gene therapies, the presentations brought together important developments from across our international community.
Thank you to the American Society of Nephrology for hosting Kidney Week and to all researchers, their teams and everyone contributing to new treatments, a better understanding and care for people living with Alport.
Collaboration
Old Mill’s Chippenham office chooses Alport UK
Thank you to Old Mill’s Chippenham office, part of Kinbrook Group, for choosing Alport UK as its Charity of the Year!
Following a nomination from their colleague Margaret and a staff vote, the team will raise funds and awareness over the coming year. Planned activities include an office tuck shop and the Bath to Bristol Half Marathon.
Thank you, Will and Team Allsop
A huge thank you to Will Shoebotham, one of our fantastic fundraisers, who also volunteered at The 2026 International Workshop on Alport Syndrome in Budapest this September. We’re grateful for the time, energy and enthusiasm he gives to Alport UK.
Allsop LLP’s team has now raised an incredible £29,222.30, plus £3,523.05 in Gift Aid, for Alport UK! Thank you to everyone who has fundraised, donated and supported their efforts.
Could your workplace follow their example and make Alport UK its Charity of the Year? Get in touch at fundraising@alportuk.org—we’d love to hear from you.
Events
Walk for Alport UK at Kiltwalk 2027
Registration for Kiltwalk 2027 is open! With walks in Glasgow, Aberdeen, Dundee and Edinburgh, it’s a chance to get together with friends, family or colleagues and raise funds for Alport UK.
Choose us as your charity when you register and help support people and families living with Alport.
Fundraising stories
Adele’s first half marathon for Alport UK
This month, we shared Adele’s plans to take on her first half marathon at Heaton Park in Greater Manchester on Sunday 11 October.
Inspired by a close friend’s connection to Alport, she chose to raise funds and awareness to support families across the UK. Thank you, Adele, for choosing Alport UK!
Jess and friends warm up their fundraising
Inspired by other Alport UK fundraisers, Jess and her friends sold hot chocolate in Norfolk to support our work.
Their creativity shows how a simple idea, shared with friends, can make a difference. Thank you to everyone involved! If Jess has inspired you, get in touch to discuss your own fundraising idea.
Help us make a difference
Everything we do is made possible by people like you. Your support helps us provide trusted information, connect families, drive research and build a brighter future for people living with Alport.