Alström Syndrome UK

11/08/2026

Join us for our next AS Global webinar!

We’re excited to introduce our new Beyond Sight Series, beginning with an exploration of the world of Meta Smart Glasses.

📅 Date: 24th September 2026
🕖 Time: 7:00–8:00 pm (UK time, BST)

You may have heard people talking about Meta Smart Glasses and the growing impact they are having around the world. But what exactly are they, and what can they do?

You may also have heard how these glasses are helping people on their journeys towards greater independence and autonomy. But how can they help in everyday life, and what challenges do they present for our community?

During this webinar, we’ll explore the possibilities offered by Meta Smart Glasses, look at some of the challenges and limitations, and hear different perspectives and experiences.

As always, it will also be a great opportunity to connect with our global community online, share experiences, ask questions, and have an open conversation in a safe and welcoming space.

Register to attend using the link below:
ce70ce13-d9fc-4fd8-a6c4-df1037b0c655@b72943d1-a23d-477d-b9ee-07b09bc1c27e?source=copyLinkLegacyShareLinkDialog" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/ce70ce13-d9fc-4fd8-a6c4-df1037b0c655@b72943d1-a23d-477d-b9ee-07b09bc1c27e?source=copyLinkLegacyShareLinkDialog

We hope you can join us!
Alstrom Syndrome International Alstrom Syndrome Australia Alstrom Syndrome Canada Alström Sendromu Türkiye Asociacia Alströmovho syndromu -Slovensko Síndrome de Alström España ASSAI APS - Associazione Sindrome di Alström Italia Initiative Alström Melissa Crowland Kerry Leeson-Beevers

Microsoft Virtual Events Powered by Teams

10/08/2026

Grants for Holidays and Day Trips 2026.
We know how expensive summertime can be so we have put together some information on our website that may be able to help.

Now we are approaching summer and we know how expensive summertime can be so we have put together some information below that may help.

03/08/2026

Family Festival Highlights, Special Memories from a Truly Special Day!

03/08/2026

📸 Relive the memories from the ASUK Family Festival 2026! 💙

What an incredible day it was! From trying new sports and meeting amazing animals to spending time with friends old and new, it was a fantastic celebration of our wonderful Alström community.

We've now added the highlights into a Family Festival 2026 Report to our website, along with a photo gallery of some of our favourite moments from the day. We hope it brings back lots of happy memories! 😊

👉 Check it out on the ASUK website: https://www.alstrom.org.uk/family-festival-a-day-to-remember-2/

If you joined us, we'd really appreciate it if you could spare just a few minutes to complete our feedback form. Your comments help us understand what worked well and, importantly, how we can make future events even better for everyone.

📝 Complete the feedback form here: https://forms.gle/S8YKZiWbYDRoT9xu9

A huge thank you once again to everyone who attended, volunteered, delivered activities and helped make the day such a success New College Worcester Guide Dogs UK Tomcat SNI Ltd Sense
Seeing over 90 people come together to celebrate, connect and try something new was truly special.

We'd also love to hear your favourite memories from the day, so feel free to share them in the comments below! 💙
Alstrom Syndrome Australia Alstrom Syndrome Canada Alstrom Syndrome International Alström Sendromu Türkiye ASSAI APS - Associazione Sindrome di Alström Italia Asociacia Alströmovho syndromu -Slovensko Kerry Leeson-Beevers

23/07/2026

Let's celebrate 5 years of AS Global. 🌍💙

What began as a shared vision to bring the global Alström community closer together has grown into a global network of collaboration, friendship and hope.

Over the past five years we have worked alongside individuals, families, clinicians, researchers and organisations across the world to share knowledge, strengthen partnerships and connect people together.

Together we have:
💙 Connected the global Alström community.
💙 Supported collaboration between countries.
💙 Shared knowledge and resources.
💙 Helped amplify the voices of people living with Alström Syndrome.
💙 Worked towards a future where no family feels alone.

None of this would have been possible without the incredible dedication of our partners, volunteers, healthcare professionals, researchers and, most importantly, our families.

As we celebrate this milestone, we're also looking ahead with excitement. Building on everything we've achieved together, we're looking forward to the next chapter, including new opportunities to strengthen collaboration, inclusion, research and support even further.

Thank you to everyone who has been part of the AS Global journey over the past five years. Here's to the next five! 🌍✨

Alstrom Syndrome Australia ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome International Alstrom Syndrome Canada Alström Sendromu Türkiye Initiative Alström Síndrome de Alström España Millie's journey with Alström Syndrome and Giant Bolster Asociacia Alströmovho syndromu -Slovensko

23/07/2026

The charity VICTA UK have opened their 2026 Grant funding.

The 2026 applications will be considered for children and young people who are registered as blind or severely sight impaired (SSI) from the age of 8, up to and including the age of 29 years and who are permanent residents in the UK. The programme is designed to help young people build or maintain their independence and retain control of their lives and leisure time.

Check out more information on their website:

VICTA grant scheme for children and young adults who are severely sight impaired In 2026 applications will only be considered for children and young people who are registered or are registerable as blind or severely sight impaired (SSI) from the age of 8, up to and including the age of 29 years and....

16/07/2026

💙 What an incredible day!

Thank you to everyone who joined us at our ASUK Family Festival 2026. An amazing 90 people came together for a day of fun, friendship and new experiences!

We've shared a round-up of the day on our website, along with our Family Festival feedback form.

If you attended, we'd really appreciate it if you could spare just 5 minutes to tell us what you thought. Your feedback will help us make future events even better!

👉 You can share your thoughts on the link below
https://forms.gle/ann6NuuEabTKEZS49

Thank you once again for helping make the day so special! 💙

Alstrom Syndrome International Alstrom Syndrome Australia ASSAI APS - Associazione Sindrome di Alström Italia Alström Syndrom e.V. Alström Sendromu Türkiye New College Worcester Guide Dogs UK Tomcat SNI Ltd Pam Nagra Kerry Leeson-Beevers Annalise Sykes Bailey Macy's world

https://www.alstrom.org.uk/family-festival-a-day-to-remember/

13/07/2026

🎉 What an incredible day! 💙

A huge THANK YOU to everyone who joined us for our ASUK Family Festival at New College Worcester on Saturday.

We were absolutely delighted to welcome 90 children, adults, families, professionals, volunteers and supporters for a day filled with fun, friendship and new experiences.

From judo, archery, axe-throwing, swimming, go-karts and inflatables to animal encounters, crafts, ponies, the gym sessions and our beautiful Family Tree, it was wonderful to see so many smiles, new friendships and people having the confidence to try something new.

One of the highlights of the day was seeing so many people stepping out of their comfort zones, having fun, discovering new activities and encouraging one another along the way.

Events like these simply wouldn't be possible without our amazing community, dedicated volunteers, activity providers, professionals and supporters. Thank you for helping make the day so special. 💙

📝 We'd love your feedback!

If you attended the Family Festival, we'd be really grateful if you could spare just a few minutes to complete our short feedback form. This helps us understand what worked well and how we can make future events even better.

👉 https://forms.gle/qKFmpnjfRhR5m3cz7

Thank you once again for making our Family Festival such an incredible success. We can't wait to see you again next time! 💙

Alstrom Syndrome Australia Alstrom Syndrome Canada Alstrom Syndrome International Angies Animal Antics Annalise Sykes Bailey Pam Nagra Tomcat SNI Ltd Guide Dogs UK SenseArchery GB Kerry Leeson-Beevers Alström Sendromu Türkiye Asociacia Alströmovho syndromu -Slovensko

23/06/2026

🎉 Final Call for Family Festival Bookings! 🎉
🚨 LAST 48 HOURS TO BOOK – Family Festival registrations close Thursday! 🚨

We are absolutely delighted that 88 people have already confirmed their place at the ASUK Family Festival on the 11th July at New College Worcester

It's shaping up to be a fantastic day of connection, fun, support and community.

If you've been meaning to book but haven't quite got round to it yet, now is the time! Don't miss out on a wonderful opportunity to meet other families, enjoy the activities and be part of this special event.

📅 Booking deadline: Thursday
👉 Book your FREE place NOW https://forms.gle/7xpGp35DKmYZEGFL9

Please help us spread the word by liking, commenting and sharing this post with anyone who may be interested.

We can't wait to see everyone there! 🌟