ASUK Board of Trustees 2022

 
Sharon Bates, Chair (appointed 2^nd November 2019) 

Sharon has been an ASUK Trustee for 3 years and was appointed as Chair from the 1^st April 2022.

“I have worked within the NHS for many years, and now work as a Practice Manager at a medical centre in Devon. This involves the day to day running of our practice to provide patient care and planning future service developments.

I hope to bring my knowledge of healthcare, NHS systems and my drive to support charities to my role as an ASUK Trustee.

I continue to work in a variety of voluntary roles for local charities; volunteer dog walker for the Cinnamon Trust (for 20 years) and I volunteer at a local North Devon animal charity (for 5 years) where I help to care for stray, ill or unwanted pets prior to rehoming. I am also the Chair of the Board of Trustees for the North Devon Hospice (having been a Trustee for 3 years).

I enjoy travelling and have been fortunate enough to travel the world over the last 30 years – and I continue to do so. You will often find me walking the great outdoors as I am lucky enough to live close to moors and coastal paths.”

Kez Hayat, Interim Vice-Chair (appointed 10^th September 2013)

Kez has been an ASUK Trustees for 9 years and was appointed as interim Vice-Chair from 1^st April 2022.

Kez has extensive knowledge and experience of Alström Syndrome, through his own lived experience as a parent of a Son living with AS.

Kez is also Head of Diversity and Inclusion at Bradford Teaching Hospitals NHS Foundation Trust, which has proven invaluable as we utilise his knowledge on the Breaking Down Barriers project Advisory Board.

Dr Richard Paisey (appointed 7^th February 2015)

Richard has been an ASUK Trustees for 7 years.

“I’m an active member of the ASUK Board of Trustees. My work with Alström Syndrome spans 15 years, including the provision of service and leadership of Lottery science grant studies. This led in 2015 to the publication of research studies confirming reversibility of diabetes in Alström Syndrome with lifestyle change and the causes of coronary artery disease in the condition. I was a Consultant Physician specialising in Diabetes and Endocrinology from 1986 to 2012 and research I have undertaken has included foetal and neonatal physiology, adrenal response to stress in malnourished infants, neuropathy, nutrition, and metabolic studies in diabetes. Between 2011 and 2017 I was the lead for a peer review of diabetic foot services in the Southwestern Region of England. This has contributed to reduction in diabetes related lower limb amputations in the Southwest region.”

Richard will be stepping down from the board at the end of 2022.

Melissa Crowland (appointed 2^nd November 2019)

Melissa has been an ASUK Trustees for 3 years.

“I was diagnosed with Alström Syndrome when I was 26 years old, and it has been a really interesting time getting to know the ins and outs of the syndrome.

I have a bachelor’s degree in applied social sciences and a Master’s degree in social work.  My passion is for raising awareness and promoting equality, this coupled with my studies and new diagnosis have made me extremely excited to join the Board of Trustees and further the cause of Alström Syndrome.

In the future, I look forward to getting to know more families and raising awareness for both present and future generations.”

Prof. Tim Barrett (appointed 2^nd November 2019)

Tim has been and ASUK Trustees for 3 years.

Until 31^st March 2022, Prof. Tim Barrett was the Paediatric Clinical Lead for the Alström Paediatric Service at Birmingham Women’s and Children’s Hospital. Tim is now focusing on research as a Professor of Paediatrics at the University of Birmingham, Honorary Consultant in Paediatric Endocrinology and Diabetes, and Programme Director for the Wellcome Trust Clinical Research Facility at Birmingham Women’s and Children’s Hospital.

Tim has been involved in delivering the AS clinical service for many years and has a wealth of knowledge, expertise, and experience of this ultra-rare complex condition.

Haris Hamid (appointed 9^th March 2022)

Haris became an ASUK Trustee this year.

Haris is part of the Alström Syndrome community and is very enthusiastic to bring his knowledge and lived experience to support the Board of Trustees.

“I would like to be part of the board because I have Alström so I can use my experience to help families understand what Alström is about. I’m keen to learn and will be able to help and participate in any new research and development taking place. I have studied level 3 Business which involved a lot of financial elements so my knowledge can be helpful when coming to the board.”

Carol Prescott (appointed 9^th March 2022)

Carol became an ASUK Trustee this year.

Carol, is a Habilitation Specialist as part of the Sensory Needs Team in Bury. Carol has worked with many of our young people and families over the years and brings a wealth of knowledge and experience of the care and support system.

“I have worked for many years in various local government Sensory needs teams. After re training to be a Habilitation specialist over 14 years ago I have had the pleasure of taking a journey with so many babies, children/ young people and families teaching strategies to develop independence.

The role introduced me to Kerry over 10 years ago and many wonderful/dedicated staff within ASUK along the way. Together we have shared the values that we all hold, and I was honoured to be accepted on the Board of Trustees at the beginning of this year. I will strive to work hard to ensure that all decisions are in the very best interest of the Alström community. Out of work I am very blessed that I can take breath-taking walks on the Cumbrian fells/ mountains with family and friends.
I look forward to working closely together with you all and continue to drive the charity forward.”

Jane Biglin (appointed 18^th July 2022)

Jane became an ASUK Trustee this year.

Jane, retired from her role as ASUK Senior Family Support Worker in April 2022.

“I joined the ASUK team in August 2016. I thoroughly enjoy meeting and supporting people affected by Alström and truly feeling part of a wonderful family. My early career was in travel – first as part of a very small charity which gave information on holidays for people with disabilities and then taking this knowledge to customer services within large UK tour operators. I then moved into universities and colleges to support sensory impaired students and then qualified as a Post 16 Teacher of the Deaf and worked with people with Usher Syndrome through Sense. It is always my aim to listen to what people say to enable me to guide them towards achieving their aims.

I retired from my family support role in 2022, but I am now an ASUK volunteer and looking forward to joining the board, helping and supporting where I can.”

Mokey Yates (appointed 18^th July 2022)

Mokey became an ASUK Trustee this year.

Mokey, recently retired from her job at Ernst & Young (EY) Global. A Chartered Accountant based in London, her role involved developing policies and methodologies that are used by EY’s audit teams around the world.

Mokey grew up in South Africa, where she met Marina Valenti, from AS Italy at school. They are lifelong friends, despite now living in different countries – Marina in Italy and Mokey in England.  Marina, whose daughter has AS, introduced Mokey to Ann Chivers, ASUK Executive Director, and as a result, Mokey is now looking forward to joining the Board of Trustees, and hopes she can help to further the aims of ASUK. Mokey has previously assisted with the ASEU accounts, and her financial experience and knowledge will be invaluable in supporting the Board.

Mokey is married to Roger, and they have two children and two grandchildren. Besides babysitting her grandchildren as often as possible, Mokey loves walking in the countryside, dancing (ballroom, Latin and ballet), building dolls houses and reading.  She moved to rural Northamptonshire in 2018, where she enjoys the wonderful birds and abundant wildlife of the Nene Valley, as well as the flowers, fruit, and vegetables that Roger grows in their garden.

Last Updated: 26^th September 2022