Thank you to everyone who joined the Alstrom Community on the 19th October 2019 for the Alstrom Syndrome UK Past, Present and Future conference in Birmingham. Whilst the families and professionals gathered at the conference, the youngsters had a fun-filled day at Drayton Manor Theme Park.
The conference brought families together to map their diagnostic journey, with the aim to learn how they were diagnosed so we can target our future awareness campaigns to ensure families affected are diagnosed quicker.
Liz Loughery, ASUK Project Manager gave an introduction of the future plans for a Patient Registry and explained how families can enrol to add their information in a safe and secure way to improve our understanding of Alstrom and gain further insights into this complex condition.
The day was highlighted with lots of interactive workshops from Guide Dogs from the Blind, our members Alex and Haris gave their insights into the most useful technology and gadgets , Hassan and Kez gave an account of their healthy lifestyle and how they keep themselves motivated, Gayle from Birmingham Children’s Hospital relaxed attendees in her yoga workshop and Kerry discussed everything Alstrom with new families, introducing ASUK and the challenges faced by families.
Dr Tarek Hiwot presented his latest research and clinical updates and discussed future treatments, developments and the challenges faced.
The highlight of the day was dancing to the exercise routine called the ‘Stroove’ this not only saw the ASUK team joining in, but also professionals from across Europe getting up to dance along to the music!
A HUGE thank you to everyone who came to join our Alstrom community and discuss everything Alstrom.
Thank you to Liminal BioSciences and Rhythm Pharmaceuticals for sponsoring the event and for the kind donations from companies for our charity raffle including:
Experience Days, who gave a £50 voucher www.experiencedays.co.uk
West Midlands Safari Park who gave 2 tickets to their attraction
B&Q who kindly donated a £30 gift voucher
Glee Comedy Club for 2 tickets to one of their live shows
Mary’s shock at winning the white tiger was priceless!
Thank you to everyone who gave generously in the evening, we raised £200