AS Global


AS Global

Our aim is to bring the global Alström community together. Bringing individuals affected by Alström, their families, clinicians and researchers together to work in collaboration so we can learn more about this ultra-rare complex condition.

 

Collaborating with families, professionals and AS organisations from around the world and growing by the day!

We try to meet virtually via zoom on the last Thursday of every month to chat together and discuss a relevant health and wellbeing topic. You can catch up on any you have missed here, including our top tips from each session.

Please also get in touch with Catherine if you would like to contribute to a session or if you have a topic you would like us to explore, we invite an expert and/or an expert by experience to help answer your questions.

If you would like to be added to our mailing list, please get in touch with Catherine Lewis by email catherine.lewis@alstrom.org.uk

Where a warm welcome awaits!!

On the 4th and 5th December 2020, ASUK were delighted to hold the first ever, virtual Alström Syndrome Global conference.

You can read a summary of both days, including lots of insights and further information in the conference report HERE

In true 2020 style, the Alström 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:

We hope this will be the first global conference of many!

We look forward to seeing you all at the next one!!

 

Alström Global Virtual Conference

Bringing together families and professionals to connect, share and inspire one another from around the world.

It was a truly global affair, with speakers from the UK, Italy, China, America and beyond, joining us to share their knowledge, experience and insights into this ultra-rare complex condition.

From clinical and research updates and inspiring stories from those who have a passion for everything Alström.

You can read our full conference report HERE

Don’t worry if you missed the event or would like a re-cap, you can find all the highlights of the day below in films of the day:

Welcome back our colleagues and communities in China

The first film welcomes everyone to the event. The first speaker was Qianwen Zhang and Dr. Xiumin Wang, Chief of Department of Endocrinology, from Shanghai’s Children Medical Centre, discussing the continuing research across China. Exploring the onset of symptoms compared with the rest of the wider population throughout Turkey, America and Poland. She also discussed her research into facial features and whether this could be a diagnostic tool going forward.

 

Welcome to the world new bambino!

Dr Pietro Maffei Consultant Endocrinologist from Padua University in Italy, was up next with his eagerly anticipated presentation about the first baby born to a couple, where the Mother is affected by Alström Syndrome.

‘AS discovered in small village in Palestine’

Next we welcomed Dr. Reham Khalaf-Nazzal, MD, PhD, Physiology and Medical Genetics from the Faculty of Medicine from Arab American University/Jenin and Dr. Emma Baple, Clinical Senior Lecturer (Genomic Medicine), Consultant in Clinical Genetics from the Royal Devon and Exeter Hospital, England. They discussed the partnership between Exeter Hospital in England and the community work happening across the Palestinian Territories. They have found clusters of families affected by AS in a small village in the Palestinian Territories and they are using the facilities at Exeter Hospital, to implement diagnostic genetic testing.

Do you know your BP from your BMI?

Prof. Barrett explained about how we can monitor our own health at home and what the readings mean for us.
He gave some top tips throughout, about how we can lower our blood pressure, such as reducing our salt, eating lots of fruit and vegetables, avoiding saturated and trans fats and tobacco, reducing our alcohol intake and having regular exercise.

Accepting and Connecting

Marina from Italy shares her own family journey of acceptance and resilience.

The Three Amigos!

Then we heard from Jennifer from America, about her three Amigos—sharing her family story of her three boys being affected by AS.

Horsing around

Lexi our own ASUK Vice Chair was up next. Showcasing how she overcame Covid-19 and became a dressage champion.

Focus on Sight Support

We were delighted to welcome Archana Kulkarni, Consultant Ophthalmologist, Paediatric Ophthalmology and Adult Strabismus from South Warwickshire NHS Trust, Warwick Hospital and Birmingham Women and Children’s Hospital.

Archana discussed sight, support and beyond, looking at the different lenses, tints and support aids which can help people affected by vision loss.

I’ve won the lottery again!

Cathy Chadwick-Rayner from our Breaking Down Barriers project brought us a quick snapshot of scams and how to keep you and our loved ones safe.

Do you know how many people in the world have AS?

Alyssa Mendel, Research Project Manager, from Coordination for Rare Diseases at Sanford (CoRDS) gave us a whistle-stop tour of the Sandford Research Unit and explained all about the AS Patient Registry and why it is important for everyone to be involved.

This film also includes summaries and key points from Robin, Ann and Kerry as the event comes to an end.

On the 28th April 2022 the AS Global community came together for a virtual, Wellness Club webinar.

This webinar brought together, Dr Richard Paisey, Alström Syndrome clinical expert and Marina Valenti, Mom, and expert by experience from AS Italy Association, who gave their viewpoints about leading a healthy lifestyle to the Alström global community.

You can read the top tips from the session in a word document HERE or as a PDF file HERE

You can view the recorded session below

 

You can find further top tips and resources on the Stay Fit, Stay Healthy, Stay Happy page HERE

On the 24th March 2022 the AS Global community came together for a virtual, Wellness Club webinar.

Melissa, ASUK Trustee gave her experiences of completing the Patient Registry and being able to keep her medical information all in one place.

You can view the recorded session below

 

Melissa gets together virtually with Lexi, who couldn’t make the webinar to give her top tips in the short film below:

 

 

You can find further information and enrol onto the patient registry via the link HERE

If you need any assistance of support to do this, please get in touch with Catherine Lewis catherine.lewis@alstrom.org.uk

 

On the 24th February 2022 the AS Global community came together for a virtual, Wellness Club webinar.

Lexi, ASUK Chair gave her experiences of living with Diabetes and leading a healthy lifestyle.

You can view the recorded session below

You can also hear Lexi’s top tips to how she manages her diabetes in the short film below:

You can find further top tips and resources on the Stay Fit, Stay Healthy, Stay Happy page HERE

Following the virtual AS Global conference on the 4th December 2021 we have been working in collaboration with Dr. Reham Khalaf-Nazzal, Physiology and Medical Genetics from the Arab American University/Jenin and Dr. Emma Baple, Clinical Senior Lecturer (Genomic Medicine), Consultant in Clinical Genetics from the Royal Devon and Exeter Hospital, England as they have discovered clusters of families affected by Alström Syndrome in a small village in Palestine.

The AS specialist clinicians from the UK have met with Reham and Emma to discuss ways that they can support from afar with virtual meetings and learning from each other as some of the symptoms associated with AS have been different in those affected in Palestine.

It will be interesting to discover why this is and ways that these teams can support each other going forward.

Reham and Emma, presented about their ongoing work and the families affected in Palestine during the global conference in 2021. A brief summary is below:


You can find the full summary of the AS Global conference in 2021 by clicking HERE