Under the leadership of Kerry Leeson Beevers we recently joined up with other patient organisations and support groups to workshop how we can collaboratively support inclusive services for all those affected by genetic conditions. This workshop is one of the many activities we have designed to share knowledge about the inequalities experienced by families in
Cardiomyopathy is one of the conditions that some people with Alström Syndrome are diagnosed with. In view of this our National Development Manager Kerry Leeson Beevers went along to the Cardiomyopathy UK Information day earlier this year to understand more about dilated and restrictive cardiomyopathy and to learn about new developments in research, medication
The ASUK team attended the QAC Sight Village event in Birmingham in July. This was a very worthwhile and informative event for people who are visually impaired, for professionals and for organisations wishing to improve their services for the visually impaired. More information on the QAC upcoming events can be found on their website: http://www.qac.ac.uk/exhibitions.htm.
A huge THANK YOU to Children in Need! ASUK are committed to improving services for our young people and their families. In 2015, we were lucky enough to receive 3 years funding from Children in Need to provide support to young people to support them through transition from clinics at Birmingham Children’s Hospital to the
Alström Syndrome UK would like to extend our thanks to Wickersley Cricket Club! Yet again members of the club have very kindly donated £1,916.66 to Alström Syndrome UK following a successful fundraising event. 17 year old Kion (pictured left), who is affected by Alström Syndrome accepted the donation earlier this month. We are all very
What is the Big Activity Challenge? ASUK are now offering adults (18’s and over) with Alström Syndrome, the chance to try a new activity. You can apply for between £50-£500 to pay for the activity, all we ask you do is provide some photographs and write an article for publication in the ASUK newsletter (within