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Conference 2014

The ASUK Family and Professional conference 2014 took place at the historic and beautiful Brunel Manor in Torquay on Saturday 16th August 2014.

The conference was chaired by Trustee Kez Hayat and ASUK National Development Manager Kerry Leeson-Beevers (pictured below).

Kez crop

Kerry Leeson-Beevers






The morning sessions were centred around current and future research projects. Dr. Rob Cramb, Consultant Endocrinologist at Queen Elizabeth Hospital in Birmingham gave updates about the AS Clinics and current research projects which families have been involved in. ASUK Founder and Director, Kay Parkinson went on to explain about the potential funding from the Horizon project and how we would work at a European level. This was followed by Hans Erik Frolander who travelled all the way from Sweden to discuss the Theory of Mind research study and gave an insight into how the interdisciplinary teams in Sweden work.

The AGM followed which was chaired by ASUK Chair, Michelle Hough who gave an overview of the charities activities over the last year and gave the Trustees and Managers an opportunity to explain more about their roles. Mark Millais who has been an ASUK Trustee for many years, decided to step down from his role but he would like to remain involved in the annual ASUK bike ride which is currently being organised. Mark has been a dedicated and committed Trustee, always putting the needs of our patients first. ASUK would like to give our sincere thanks to Mark for his commitment and for his many years of service.

The afternoon sessions focused on family support and advancements.  ASUK Family Support Manager, Iram Shah explained how ASUK can help and support families and her own personal story of living with the condition. Marco Gregnanin, CEO Itex Technology gave an overview of technology advancements and Katie Barron from Contact a Family gave an insight into how the new SEN reform will affect families across the UK.

This was then followed by Support and Advice sessions which gave a wonderful overview of organisations throughout the UK who are there to help. The sessions were presented by Jackie Ekers from the Citizens Advice Bureau who gave an overview to welfare and benefits, Lorna Mackie gave an overview of the services which Sense offer, Michelle Woolf showcased the services which Action on Hearing Loss offer families and Josh Allan from the Calvert Trust, Exmoor gave a presentation about their fabulous activity centre.

During the day, whilst their parents attended the conference the children had a fun-filled day out at Crealy Great Adventure Park. The children enjoyed the exciting rides, getting wet on the water slides and fun in the indoor ball pools. The children really enjoyed their experience and were returned to their parents exhausted after their exciting day. A HUGE THANK YOU to all the volunteers who helped on the day, without your support the outing wouldn’t have been able to take place.


The evening was a fabulous chance for families to get together and catch up which included the ever anticipated charity auction. This year we also ran a pop up bar and asked attendees for donations for our great cause. The auction and bar raised £925.00 which is excellent.

During the evening we also celebrated Rida’s 9th birthday with a fabulous princess cake.


Thank you to everyone for making our 2014 conference such a success. Thanks to the speakers who were excellent and gave very informative presentations and special thanks must go to those who travelled from Italy and Sweden to be with us. Thank you also to Simmie Gould who gave massages to delegates throughout the day.

(Photo below shows Massimiliano and Marco from Itex Technology who travelled all the way from Italy to learn more about the technology needs of our families as Marco (pictured, right) is a partner in Horizon 2020 grant application and he is responsible for developing M health applications.)


Most of all, thank you to our families who travelled to Torquay to take part in the conference. We have received very positive feedback and the ideas and contributions you gave during the conference will be used to develop the services we offer and will help shape our five year strategy.

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Unfortunately we did not have as many families and professionals attend as in previous years and we do accept that holding the conference in Torquay in the middle of summer may not have been ideal. The reason for this decision was that we have seen a decline in donations to the charity due to the current economic climate and we have needed to make some savings during 2014.  However, we do understand how important the conference is to families and we will be thoroughly evaluating this conference and taking your suggestions on board when planning our next one. As part of this evaluation, we would like to consult those who did not attend this year to gather additional feedback. A questionnaire will be circulated shortly.

Our charity continues to grow from strength to strength and we firmly believe this is because we continue to remain patient led and focus on issues that are important to those living with Alström Syndrome.

Thanks again and we look forward to seeing you all at our next conference!

Media Reviewed: August 2015
Next Review: August 2017