Culture Club

Culture Club

If you are 18 or under, you have come to the right place.
If you fancy being a reporter, sharing your stories, art or films and would like to have some fun… then read on…

What is the Culture Club?

The Culture Club is your dedicated area for support, information and to develop your skills through writing articles, films and empowering each other in the AS community.
This is your area to have your voice heard and join together.

Calling all budding Reporters…

You will be Reporters contributing to your community and interviewing each other and relevant outside organisations on topics which are important to you such as, ‘my guide dog and me’ and why not, tell us how you have found the telemedicine clinics. We hope by developing these videos and articles, we will ensure those of you who are unsure of new services can hear from people who have some insight into what you are going through.

With a little help from my friends…

For those of you who would like to be involved, we may be able to pair you up with a ‘mentor’ who can support you and assist you with creating your articles and videos.  Your mentor will be an adult who is affected by Alstrom Syndrome, so may be able to offer their own experiences and insights. You could interview your mentor on topics such as ‘technology I wouldn’t be without’ or ‘cooking up a storm, the gadgets that help’.

Let’s party and Celebrate…

You can also be involved in a range of exciting webinars to develop skills, confidence and chat with youngsters from the AS community.

In early 2021, you will also be asked if you would like a personalised teddy bear or soft toy from Build a Bear. This will be yours to keep and have your own adventures with. These will be funded through the project and to celebrate Rare Disease Day which is at the end of February we will be hosting a Rare Disease Day Teddy Bear Tea Party. This will be on the 26th February 2021 and you will all be invited and bring along your new teddy to share in this experience.

We have been able to provide this project, through funding kindly provided by Children in Need.
If you would like to be involved, please get in touch with Marie McGee on 07812 173953 or email