It is with gratitude that we acknowledge the contributions made by Nigel Over during his time as both a trustee and CEO of The SMS Foundation UK.
Nigel’s journey with The SMS Foundation began in 2012 when he joined as a trustee with a visionary commitment to the mission of the organisation. His dedicated efforts led to the restructuring of the Foundation’s governance framework, resulting in the implementation of a new constitution, enhanced accounting practices, and a revitalised branding strategy. Additionally, as a trustee Nigel played a pivotal role in supporting new charitable activities and awareness campaigns.
As a trustee, Nigel helped to organise a series of SMS conferences in 2013, 2015, 2017, and 2019. These conferences served as vital platforms for caregivers and professionals to convene, share knowledge, and foster a sense of community. Keen to progress understanding in the field and research into SMS, he supported several studies on sleep and behaviour.
Nigel was responsible for strengthening our SMS Professional Advisory Board during this time, providing invaluable guidance to parents, teachers, and medical professionals. Furthermore, he established the SMS Global Hub Facebook Group, an initiative that united multiple patient groups facing similar challenges worldwide.
During 2020 he managed the transition of The SMS Foundation from a registered charity to a Charitable Incorporated Organisation (CIO) of which he later became CEO.
As CEO, Nigel has shown personal dedication and commitment to families living with SMS. He was instrumental in coordinating the Regional Parent Supporters scheme; volunteers situated in different geographical regions who provide crucial local support to families. He provided significant contribution and co-authoring to the study titled ‘Caregivers’ Experience of Sleep Management in SMS,’ which was published in the prestigious Orphanet Journal of Rare Diseases.
In 2022 the SMS Foundation delivered its biennial conference which held special significance as it marked the celebration of the Foundation’s 30th anniversary. During this event Nigel facilitated a workshop with several Patient Engagement and Advisory Groups. This collaboration served as a platform to deliberate on the implementation strategies of the UK Rare Disease Framework, underlining his commitment to advocating for the broader rare disease community.
In his role as CEO, Nigel has delivered training sessions to a variety of sectors including classrooms where he has championed person-centred support for SMS children. He has engaged with NHS learning disability teams, care organisations, and adult day service providers delivering SMS awareness and training. His approach has not only showcased his dedication to promoting inclusivity and understanding but also left a lasting impression on all those he interacted with.
Additionally, Nigel’s networking skills have played an integral role in forging robust partnerships that will undoubtedly benefit The SMS Foundation in the future. He has established an internship programme, supporting opportunities that have paved the way for research into SMS. Through these initiatives, previously understudied areas such as demographics, vision impairment, education, adult living options, and SMS health have yielded invaluable insights.
Financial pressures at the start of 2023, arising from external factors impacting grant giving and donations, led to the Board deciding on the need to reduce ongoing core costs whilst sustainable income streams are found. With many elements of the strategic development led by Nigel complete and ready to implement, the role of CEO was regrettably made redundant. Since then, people management, administrative duties, and delivery of programmes are now being covered by trustees, staff, and volunteers. The SMS Foundation are now dedicating time to launching the new five-year strategy, ensuring its mission to support families living with SMS continues.
The SMS Foundation would like to thank Nigel for the legacy he leaves behind and extend our heartfelt best wishes as he embarks on new horizons, confident that his impact will continue to shine.