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Conference 2015

Information and Activity Day

On the 19th September 2015, our Information and Activity day was held at New College Worcester. It was great to see so many families enjoying themselves throughout the afternoon with fun filled activities and informative workshops. The day was chaired by ASUK Trustee Kez Hayat and the morning sessions featured our future research projects, clinical updates and information sessions.


In the morning, we had clinical presentations from our AS medical teams, Dr. Tarek Hiwot, Professor Barrett and Dr. Rob Cramb and Dr. Rick Steeds presented his cardiomyopathy study findings and updates.

Families then had the chance to listen to Aline Hagerimana, Director of Clinical Affairs, from ProMetics (pictured below) who had travelled from Canada to give families an overview of the fibrosis clinical trial. This was followed by a presentation from Dr. Richard Paisey about the proposed ‘lifestyle study’ researching the effects of a healthy lifestyle and how this can help patients manage their condition more effectively.


Jane Lodwig, Rare Disease Project Manager at University Hospital, Birmingham showcased the new Rare Disease Centre and explained how these plans were coming together. Before lunch, Sue Bushell, Community Engagement Officer from Guide Dogs for the Blind gave an overview of the work of Guide Dogs for the Blind and provided useful information for families.

Families embraced the opportunity to chat with the professionals and medical experts attending the conference and the chance during the panel discussions to ask any questions in a relaxed and informal manner.

At the event, the ASUK Team were on hand to support families to ensure they enjoyed a range of activities including circus skills, drumming, horse-riding, go-karts, zorbing, swimming, bouncy castle, mini-zoo and archery. Workshops were held in the afternoon and these included healthy eating and cooking workshops and technology demonstrations.


Hands on activities such as the mini-zoo were great ways that members affected by sensory impairments could have a memorable experience.  The zoo proved very popular for families to be able to hold and feel exotic animals such as ‘Alex’ the meerkat (pictured below) who proved a real hit!


In the afternoon we held a number of information and support sessions including a Mums/Female Carers Workshop which was facilitated by Iram and Dads/Male Carers support session which was facilitated by ASUK Trustee Kez Hayat. The running theme of the workshop was around the child with Alström and their journeys in living with this complex condition. The sessions provided mutual support and enabling each other to feel safe enough to share their own experiences and learn from each other. These sessions went really well and the overall consensus was that participants really value coming together to talk about their experiences and to learn and network from each other, which they feel is very powerful.

The healthy eating workshop provided a chance for families to create some quick and easy healthy meals with Natalie Bufton (New College Worcester, ILS Teacher), Marie McGee (ASUK Transition Coordinator) and Sarah Boocock (Dietician at UHB).


Families also had the opportunity to have a go at Goal Ball with one of our members, Liam Mackin and gain further information from Guide Dogs for the Blind and Dolphin Computers as well as technology demonstrations.

A huge thank you to New College Worcester, their support and facilities were excellent to provide both activities and conference presentations. Tours of the college were available throughout the afternoon to enable families to ask any questions about the specialist school.

It was great to see so many families enjoying the activities in the afternoon, every activity was accessible and provided fantastic opportunities for everyone to have a go no matter what their disability – proving it is what you can do that is so important.

During the Annual General Meeting which was Chaired by Michelle Hough, families and professionals came together to learn more about the charities work over the past year and our priorities moving forward. Before leaving everyone had the opportunity to socialise together as they enjoyed a delicious two course meal, followed by a fun raffle before travelling home.


One family gave their thoughts “Everything was good, the kids loved all the activities, especially the horse riding. We had a very memorable, amazing time here”