On the 4th and 5th December 2020, ASUK were delighted to hold the first ever, virtual Alstrom Syndrome Global conference.
In true 2020 style, the Alstrom global community came together from 23 countries and took a virtual tour of the world, with insights from AS experts and inspiring personal presentations from families.
It was certainly a global affair with presenters from China, France, Scotland, Italy and here in the UK.
Some of the feedback we have received from families about what they enjoyed about the conference:
“Today was great!! Understandable for the parents and patients. If we can’t be in person, this is the next best thing.”
“I enjoyed all of it, something there for everyone. I can really see how the involvement of children, young people and families are helping to shape the charity. Loved hearing from clinicians, researches and workers within ASUK. Some minor problems with technology but this did not impact upon my enjoyment of the presentations. Clinicians sessions were very thought provoking and raised many questions for me. ASUK is really developing as a charity, the CEO presented really well giving a confident performance.”
The programme was full of clinical and research updates from around the world, as well as top tips to stay healthy and personal experiences from families too. You can download the agenda here
Both days of the conference were recorded:
The Friday sessions can be found HERE
The Saturday sessions can be found HERE
The only areas of the recording which can’t be viewed on this video, is the videos which we played during the event. You can find these videos below:
The video explaining all about the patient registry and how you can get involved, can be viewed below:
The beautiful piano rendition by Jamie Seeger in America, can be viewed below, it also contains some of your most precious photos.
Kerry gave an insightful presentation about Telemedicine clinics, this video can be viewed below:
Trying to keep our community fit and healthy is one of our goals and you can view the fun-filled ‘Stroove’ exercise video below:
This year’s ‘Past, Present and Future’ conference took place on the 19th October 2019 in Birmingham.
The wonderful creation below really highlights the key points and fruitful discussions from the day;
During the conference we took the opportunity to hear from families and professionals to hear why they attended the conference and the current work happening in the Alstrom Community.
The conference brought families and professionals together to discuss their diagnostic journey and how we can improve these experiences for future families. Whilst parents took part in the event, children and young people had a fun-filled day out at Drayton Manor theme park.
Ann Chivers, (ASUK Chief Executive) opened the conference with a warm welcome to everyone who had travelled far and wide to attend. Ann then facilitated a workshop where families had the opportunity to tell their stories of how they were diagnosed. These stories were all different, with some having a quick diagnosis but many experiencing a difficult journey to diagnosis with many missed opportunities to be diagnosed along the way.
Tarek gave an insight into research and clinical developments and gave possible hope for the future through gene therapy treatments.
Liz Loughery (ASUK Project Manager) introduced the Patient Registry which ASUK have been developing. Liz explained how important information is to aid further research, treatments and advancements into Alstrom. Liz explained how families could enrol and how over the next few months this will be ready.
The day included interactive workshops, we heard from
One of the highlights of the day was dancing to a newly created exercise routine called ‘the Stroove’ this was great fun and it was fantastic to see families, the ASUK team as well as some of the Clinicians taking part and dancing along to the music!
The evening entertainment saw families taking to the dance floor to show us their moves and Mary’s shock at winning the large fluffy white tiger was priceless!
Thank you to everyone who gave generously in the evening, we raised £200
A HUGE thank you to everyone who came to join our Alström community and discuss everything Alström!
“Thank you so much for the warm welcome and wonderful information provided.
Exceeded our expectations!” Mary Ahern, family member who travelled from Ireland
Thank you to Liminal BioSciences and Rhythm Pharmaceuticals for sponsoring the event and for the kind donations from companies for our charity raffle including:
We look forward to welcoming you all again, same time next year!
The ASUK Family and Professional Conference took place at the Aston Conference Centre in Birmingham on the 6th and 7th October 2017 and it is fair to conclude that it was a HUGE success! The event brought together families, individuals and professionals from the UK and across Europe to learn more about this ultra-rare condition. So many people contributed to ensure that everything ran smoothly and participants had lots of time to network, catch up with old friends and find out about research as well as new project initiatives.
We have received lots of positive feedback about the presentations, the workshops and the fun stuff!
You can view the full conference report HERE
Watch the highlights from the conference in this video below
Watch Dr Rick Steeds giving a thoughtful summary of the Scientific Symposium
“Diagnosed at 17” Interview with Kez and his son Hassan
ASUK Trustee, Kez and his son Hassan give an insightful interview about being diagnosed at 17 years old with one of the rarest conditions in the world, Alström Syndrome.
You can watch this truly insightful video below:
“We are an Alström family” Interviews with Clinicians and professionals
Watch this truly thoughtful video below to see interviews with Clinicians and professionals during the ASUK Conference. Talking about the AS multi-disciplinary clinics, research initiatives and why it is essential to bring everyone together to share information and knowledge to widen our understanding of this ultra rare complex condition, Alstrom Syndrome.
“We help each other” a parents perspective
Hear from mums, Julie and Pam as they discuss why the ASUK conference is important to them. As well as giving a truly insightful parents perspective of being affected by one of the rarest conditions in the world, Alstrom Syndrome.
The graphic below was produced during the conference to capture this truly memorable event.
We hope you all found the 2017 conference as informative and inspiring as we did.
We look forward to seeing you at the next one!
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 charity’s 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”
The conference was chaired by Trustee Kez Hayat and ASUK National Development Manager Kerry Leeson-Beevers (pictured below).
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.
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.
On the 28th April 2013 we held our family and professional conference at the Menzies Strathallan Hotel, Birmingham. Children who attended the conference had a fun filled day out at Drayton Manor theme park, thank you to all the volunteers who kindly gave their time to help on the day.
The conference was a great success and was filled with interesting research talks in the morning and family workshops in the afternoon. Families really appreciate the time together and they really enjoyed the presentation by award winning Liam Mackin who is affected by AS, many families thought his presentation was truly inspirational, well done Liam!
During the conference families attended the ASUK Annual General Meeting.
Thank you to everyone who joined in the charity auction and tombola, on the night we raised £1,034.00
Whilst the adults are at the conference the children are taken for a fun-filled day out. This year we went to Drayton Manor Theme Park, the weather was glorious and the children had a great time.
You can download a copy of the conference programme here.
Media Reviewed: March 2017
Next Review: March 2019