Hazel Wotherspoon – Chair Person
Parent to adult daughter with SMS
Hazel Wotherspoon is a mum of 4 young adults, 3 of whom have significant disabilities; her daughter Ellen has SMS.
Hazel worked as a physio, mainly paediatrics for 27 years before leaving work to become a full-time carer. She has been involved with the Foundation for many years first as a member and later as a trustee. Hazel strives to increase awareness and understanding of SMS, especially among professionals. Her prime aim is to support families in any way they need.
Emma Riddell – Trustee
Parent to adult daughter with SMS
Emma is a mother of three children, Harry, Grace (SMS), and Charlie. Emma is currently a full-time Mum and lives with her husband Mark in Birmingham. She is passionate about raising awareness and fundraising for the foundation.
Mick Pearson – Trustee
Parent to teenage son with SMS
Mick is the newest trustee to the Foundation and will hopefully bring a fresh incentive and new ideas. He is very proactive within the foundation giving support and life experiences to families new and old.
Mick’s drive is to support families newly diagnosed with Smith-Magenis Syndrome and seeks to connect with them in his unique way.
Mick also supports dads living with Smith-Magenis Syndrome and assists in helping them to connect with each other, he is also keen to promote awareness and fundraising for children and adults with Smith-Magenis Syndrome. His son Riley was born in 2011 and diagnosed in 2014
Jayne Dainty – Trustee
Jayne is a non-SMS parent trustee on the SMS UK Board and is the Safeguarding Lead for the charity. Jayne owns a CQC and Ofsted registered health and social care company. Jayne joined the Board after personal experience of SMS UK supporting close friends of hers, and her company supports our families and children with childcare provision at our SMS UK events.
Alistair Hudson – Trustee
Parent to infant son with SMS
Alistair is dad to a son newly diagnosed with SMS in 2024, and he has committed to the SMS cause with a number of fundraising challenges. Alistar is a qualified primary school PE teacher with 10 years experience and
has previously been a Vice Chair of Governors in a primary school. He has a strong understanding of health and social care and is currently a shareholder of a sports education company. He is familiar with implementing strategic vision and making connections with local communities, families and local authority groups.
Alvar de Wolff – Trustee
Parent to son (under 10) with SMS
Alvar is a father of three children, one of whom was diagnosed with SMS in 2022. Alvar currently works for an investment firm based in London and he chairs the Board of a French nature restoration company PUR (pur.co), having previously held Board positions in several small/medium-sized companies active in food production, environmental services and transport. With a career based at the intersection of for-profit and philanthropic/charitable organisations in the UK and the Netherlands, Alvar brings invaluable commercial experience to the SMS UK Board and is committed to raising awareness of the condition on both corporate and community levels.
Laurie Grainger – Trustee
Parent to teenage son with SMS
Laurie is mum to son Jude, who was diagnosed with SMS in 2010. She has joined the SMS UK Board as she is passionate about raising awareness of the condition particularly in hospitals and within the education system. She is also an advocate for other families living with SMS, as well as wanting to support individuals themselves living with the condition.
Andrew Bird – Trustee
Andrew is Vice-Chair of a national member led organisation called BUILA (www.buila.ac.uk) and an Executive Board member of the Southampton Business improvement District (BID).
He has a very strong background in marketing, communications and strategic development. Andrew has a son with autism and dyspraxia and understands the essential need for wider support for children with disabilities to be enabled to reach their full potential.
Bill Stevenson – Trustee & Treasurer
Grandparent to adult female with SMS
Bill Stevenson is a Trustee of The SMS Foundation and a member of the Finance & Risk Committee. His connection to Smith-Magenis syndrome began 16 years ago, following the diagnosis of his granddaughter Lily. He spent his career in IT, entering the field at the very start of modern computing after attending IBM College in Greenford in 1967, and went on to work across investment, banking and insurance as an IT programme and project manager.
Following retirement, Bill held voluntary treasurer roles within his local community and brings strong experience in financial oversight, budgeting, governance and project delivery to the Foundation, alongside lived family experience of Smith-Magenis syndrome.
Jacqui Jenkins – Trustee
Jacqui became a Trustee in 2022 as she felt she wanted to give back to the Smith Magenis Syndrome Foundation UK as we had helped her in her early days. Her son was born in 2020 and she knew he was disabled at birth, however all medical professional dismissed her concerns despite him being my second child. When her son Otis was 5 months old, she reached out to the Foundation and she says it’s the only place she has felt properly supported.
My son still isn’t diagnosed but he presents like SMS – so connecting with those with the lived experience has been life changing. She now supports the Chair Haze as the Secretariate to the Board of Trustees, and she works with the team on ensuring the Foundation monitors and evaluates its work. In her day job she is a programme manage so she uses this expertise to look at the relevance, effectiveness, efficiency, impact, and sustainability of the Foundation.
She believes if the Foundation packages the lived experience and advocate for children and adults with SMS we can make a positive impact for the next generation.