Alström Syndrome UK turns 25, AS Global is pleased to announce the world’s first annual lecture

Alström Syndrome UK turns 25, AS Global is pleased to announce the world’s first annual lecture all about Alström Syndrome.


Dear Friends and Families,

In celebration of Alström Syndrome UK turning 25, AS Global is pleased to announce the world’s first annual lecture all about Alström Syndrome.

Alström Syndrome Past, Present and Future.

You are invited to this, the first inaugural Lecture all about Alström Syndrome. This free virtual lecture will investigate the history of Alström Syndrome, what progress has been made over the last 25 years, living well with this ultra-rare disease and what the future may hold, highlighting recent and ongoing research into the ‘Alström Eye’.

Wednesday 3rd May 2023 7-8:30pm (GMT) Zoom

On World Alström Day we are delighted to announce that Dr Richard Paisey has agreed to present this inaugural Lecture.

Many of you will know Dr Richard Paisey, as a specialist in diabetes and a great advocate of diet and exercise for all. What you may not know is that Richard was involved in helping to set up the first ever Alström Syndrome Clinics in the UK, alongside Kay and John Parkinson-the founders of ASUK, 25 years ago.

He has written and contributed to some of the very first publications on Alström Syndrome, working closely with some of the first ‘AS Pioneers’ including Jan and Robin Marshall. Richard continues to contribute to the growing number of research papers and continues to practice, supporting his local community in the south of England as a Locum.

Richard has served on the board of ASUK over many years. His focus has always been on the experience of patients and their families. He has always ensured the voice of individuals and families are heard through continually consulting and listening about their priorities for their lives.

 Alström: Past, Present and Future

Richard will talk about the past knowledge and understanding of Alström and taking a global view, will share with us a potted history of the first clinical recognition of the disease and the progress made over the last 25 plus years.

In the second part of the Lecture Richard will be joined by Lexi Line. Lexi is known to many of you, not least for her horse-riding achievements and exploits! She, like Richard, has also helped shape ASUK, serving on the board as a Trustee for many years. She does have one big adventure planned and we hope she will share her news. Lexi will explore the present and living with AS.

In the third part of this webinar, we will hear from Jonathan Eintracht. Jonny works at Great Ormond Street Hospital as part of Professor Mariya Moosajee’s* team. They are conducting research into the fundamental role that cilia have in our bodies and that without cilia the eyes can’t send signals to the brain. For those with AS the cilia  doesn’t work correctly, so this research looks at medications that have been found to help and what this may mean for people with AS in the future.

To conclude this special Lecture on World Alström Day there will be a Question & Answer session open to all. We hope you will join us as we all learn more about Alström Syndrome; what we have learnt from the past, how to live well with AS in the present and what the future may hold.

Please check out the ASUK website for further information and to register your place today!

Together we will have strength for today and hope for the future.

Best Wishes


Catherine Lewis
Office Manager
Alström Syndrome UK
Telephone number 01803 368871/ 07970 071675

*Professor of Molecular Ophthalmology at UCL Institute of Ophthalmology,
Group Leader of Ocular Genomics and Therapeutics at the Francis Crick Institute,
Consultant Ophthalmologist at Moorfields Eye Hospital and Great Ormond Street Hospital for Children, London, UK.

Skip to content