We are in regular contact with families to give regular updates on the advice from the Lead Clinicians and multidisciplinary teams from the Alström Adults and Children’s clinics.
Remember we are here for you. Just a phone call or email away. You can call us or we can call you.
Links to the Government guidance can be found HERE
We have brought together a range of resources, from support services, guidance and how to stay entertained, follow this link to find out more http://www.alstrom.org.uk/family-support/
Stay safe and well.
Alström Syndrome UK offer:
- Support for families and individuals affected
- Caring and Supportive Community
- Promotion of Innovative Research
- Medical Screening Clinics where patients can receive the most up to date information to manage their condition
- Alström Syndrome Medical Handbook
- Family and Professional Conference
- Opportunities to have Fun and be part of our exciting projects!
It is important to remember, AS symptoms may develop at different stages and not everyone is affected by all of the symptoms. Even amongst siblings the symptoms can vary.
Alström Syndrome UK has three key aims:
- To support people who are affected by Alström Syndrome including their carers and the professionals who are working with them
- To raise awareness amongst both the public and medical professions of Alström Syndrome
- To raise funds to promote research into Alström Syndrome
Emergency Numbers
The Queen Elizabeth Hospital, Birmingham and Birmingham Children’s Hospital offers AS multi-disciplinary clinics and AS specialists. In an emergency your first point of contact should always be to call 999. If you need to speak to a medical expert in Alström Syndrome please contact ASUK and we will put you in touch with the correct specialist. If you would like to speak to the AS Clinical Lead please contact either:
- Dr Tarek Hiwot (adult services), Queen Elizabeth Hospital, Birmingham: 07979 127826 or alternatively via the QEH switchboard: 0121 627 2000
- Prof Tim Barrett (children’s services), Birmingham Children’s Hospital: 0121 333 9999
World Alström Syndrome Day is HERE!!
3rd May 2022 Today is the first World Alström Syndrome Day!! Celebrating Carl Henry Alström who was born on the 3rd May & discovered the Syndrome. Let’s learn more about this ultra-rare condition… Make a difference today & complete the Global AS Patient Registry so we can find further treatments and manage this complex condition effectively.
AS Global Webinar ‘How I Manage My Diabetes’
Bringing the AS Global Community Together How I Manage My Diabetes Come and join us to hear from Lexi, who will be speaking about how she manages her Diabetes, the devices she has found most useful and her top tips to stay healthy. Join together with the global community and share your top tips too!
On the hunt for a Treasurer!
Trustee Treasurer Vacancy Alström Syndrome is an ultra-rare genetic syndrome that affects less than 1 in 500,000. Alström Syndrome UK (ASUK) is a patient led organisation that supports those living with the condition, their families and those working with them. Alström syndrome is a complex and life limiting condition, it causes multiple issues; visual loss,
Winter Newsletter out now!!
Grab something hot and toasty and take 5 minutes to read our latest news… Read a the highlights from the AS Global Conference, how we kept youngsters entertained with a virtual teddy bears picnic and we introduce our newest online advocacy group, the Culture Sparkle Sisters!! Download a PDF copy HERE or a plain text
Join us for our AGM!
Our next Annual General Meeting is to be a virtual event to go through the charities updates and achievements over the last year. Why not join us to see what we have been up to and you can also ask us your questions about our work and future developments. As always we would love to
Exciting News… New CEO!!
Alström Syndrome UK announces new Chief Executive Officer It is with great pleasure that we announce the appointment of our new Chief Executive Officer, Kerry Leeson-Beevers. Many of you will know Kerry as a passionate advocate for those affected by Alström Syndrome, not only being Mum to Kion and Cole, but helping to develop the charity
My Guide Dog and Me…
Have you ever wondered what having a guide dog is really like, how are you assessed and what training is involved? Meet Kion and Curtis, they have both passed their guide dog assessment and are now on the waiting list to have their first guide dog… Following their assessment, they were both invited to Shireview GuideASSAI Family Day Padua – 13th October 2018
ASUK were kindly invited by Pietro Maffei, the president of ASSAI (Association of Alström Italy) to their family day on 13th October 2018. This was a wonderful event that we feel very grateful to have been part of. It was an excellent opportunity to share some of the knowledge we have developed in the UKCardiomyopathy UK Information Day
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, medicationASUK Annual Review Summary
The ASUK Annual Review Summary is now published! This summary captures our activities from the last financial year. We hope you agree that this gives a snapshot of how we have provided support as well as the daily achievements of many families and people living with Alström. Click below for access: ASUK Annual Review 2017-2018Wow! – Listen to Inspirational Kion on BBC Radio 2
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
Connect together for the Healthy Minds, Healthy You webinar
Join us and connect together Healthy Minds, Healthy You Webinar On Thursday 22nd October 2020 we will be hosting a webinar with Anne-Marie Walker and Sarah Turner, both Psychologists who are part of our Alstrom Syndrome clinical service. They will be giving an insight into how we can look after our mental wellbeing during
In case you missed the ASUK Annual General Meeting
Don’t worry if you missed the AGM Alström Syndrome UK held their Annual General Meeting on Saturday 2nd November 2019 from 2:00 – 3:00 pm which took place via teleconference to enable as many people as possible to listen to our updates. The AGM celebrated the achievements of the organisation and family members over the last year.News, Views and Useful Links, September edition, out now!
Welcome to your September edition, of News, Views and Useful Links. In this edition we have a full round up for you, including Amy jetting off to the Game of Thrones film sets in Ireland and discover how you can have your own adventure! and BE QUICK TO GET THIS DEAL ASUK conference is happeningA huge THANK YOU to Children in Need!
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
Mental Health Awareness Week 2019
Hosted by the Mental Health Foundation, Mental Health Awareness Week takes place from 13-19 May 2019. The theme this year is Body Image – how we think and feel about our bodies. Body image issues can affect all of us at any age. During the week the Mental Health Foundation are publishing new research and campaigning
Easy Fundraising – whilst you shop!
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
Active Lifestyle Winner!
Active Bradford is a partnership of organisations committed to making Bradford a healthier and more prosperous place to live and work. Each year Active Bradford host an awards ceremony where they recognise those people and organisations who go above and beyond in their local area to help other people get active or through their own