Latest News
Date: 15 Feb, 2018 A HUGE THANK YOU to Wickersley Cricket Club! Members of Wickersley Old Village Cricket Club kindly donated £1,700 to Alström Syndrome UK following a successful summer fundraising event. 16 year old Kion, who is affected by Alström Syndrome and whose family are members of the club gratefully accepted the donation. The funding will go towards a fun-filled activity
News, Views and Useful Links! Reaching for the Sky! One of our members Simmie who is always looking for a new challenge, shares her thoughts on her new love for trampolining, proving it is what you can do that counts. “I have recently started going to a trampoline park which opened in Birmingham not long
Did you know that you can support Alström Syndrome UK by shopping online? Every time you shop online via easyfundraising at one of the 3,300 retailers including John Lewis, Aviva, Sainsbury’s and Booking.com, a donation will be made to Alström Syndrome UK, and it won’t cost you a penny extra. It’s really simple to get
Listen to inspirational Kion (pictured below) who featured on BBC Radio 2’s Chris Evans morning show, on Monday 13th November 2017. Follow the link below to the recording, if you move the iplayer to 2 hours 1 min you can hear from Kion speaking about having Alstrom Syndrome and the work of Alstrom Syndrome UK to promote
Rare Disease UK are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “This project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. These activities will take place at events coordinated
Support this Inspirational Family! Please support Sue Manzoor whose beautiful niece, Maariyah sadly passed away in December, shortly before her 17th birthday. In Maariyah’s memory the family have decided to raise awareness of Alström Syndrome by running in the Great Birmingham 10K run on Sunday 30th April 2017. A HUGE THANK YOU to the family for supporting