Skip to content

Made up of adults living with SMA, this is a platform to share insights and opinions that can be amplified by SMA UK to make real and meaningful change.

Led by our:

  • Head of Advocacy and Community, Portia Thorman and
  • Community Engagement Coordinator, Gary Edgecombe.

Facilitated by:

  • Social entrepreneur living with SMA, Martyn Sibley.

Membership of the working group is voluntary. It is an open, honest and future focused space to discuss controversial topics and create solutions together. It may offer in person or virtual opportunities for members to share their experiences with parliamentarians, academics, clinicians and pharmaceutical companies to identify barriers, raise awareness and highlight the lack of support currently being provided.

Please email Portia.thorman@smauk.org.uk if you would like to join or there are any issues / topics you would like to be discussed.

Meet the Adult Advocacy Steering Committee

Martyn works at the intersection of business, technology, and leadership to drive change for a fully inclusive world. Diagnosed with spinal muscular atrophy type 2, he started one of the first lived experience blogs in 2009, creating high-quality content, building online communities, and founding multiple businesses. Despite his physical challenges, Martyn has pursued and achieved numerous dreams, such as working in London, driving a car with his hands, scuba diving, and being married to his soulmate. His mantra, "Everything is possible," encapsulates his resilient and optimistic approach to life.

Martyn holds a degree in economics and a master’s in marketing, which launched his career at a disability rights charity. He quickly became a prominent disabled influencer, frequently listed in the UK’s Disability Power 100. He co-founded Disability Horizons, the first disability magazine to leverage online content and social media, and Accomable, a company that revolutionised accessible accommodation and was acquired by Airbnb. Most recently, he founded the award-winning Purple Goat agency in collaboration with the Goat agency, working with multinational companies to enhance representation of disabled people in advertising. His work has significantly advanced disability inclusion and social change.

Steven graduated from Oxford Brookes University in 2015 with a 1st Class joint, honours degree in Business Management & Film Studies. During his time at university, he was elected as Disabled Students’ officer which involved representing the disabled student population across the University and two years of his degree was funded by the Motability Operations Scholarship Scheme, a programme providing financial support and challenging work placements to highly talented and motivated students. Steven also completed an industrial placement year with Hays: Talent Solutions as a Resource Consultant. 

Following university, Steven joined the Civil Service where he completed a number of key management, executive support, governance and delivery roles in HMRC, and Cabinet Office.  He is currently working for the Department for Health & Social Care as Deputy Director for Governance & Accountability.  

Steven is a qualified agile project manager and a mental health first aider. He is currently studying the Chartered Governance Qualifying Programme. He currently volunteers for Age UK, conducting weekly telephone calls with an older person to improve their wellbeing and reduce loneliness and is training to be a counsellor.  

As a wheelchair user with SMA, Steven has a passion for diversity and inclusion launched the Disability Connect Mentoring Scheme, a reverse mentoring scheme that provides business leaders with a disabled mentor to increase their awareness of disability and disability issues in the workplace.  

 

Clare Mcvicar is 43 years old with SMA type III, she has been non ambulatory since her mid-twenties. Clare is a single parent to two boys. She is a qualified primary teacher but as her SMA progressed the job became too physically demanding alongside bringing up her children. Clare now volunteers at her local art gallery / community centre and is currently studying at the University of Essex for an MA in Creative Writing.  

Clare is particularly interested in advocating for parents with SMA. Especially in supporting parents navigating the UK family court system and empowering parents with disabilities to be successful in day-to-day life. Clare recognises that there are many misconceptions about disabled parenthood and womanhood, not just in society but in the medical profession too. She believes that disabled parents voices are vital in removing the stigma associated with disabled parenting.  

Clare wants to use her voice and life experience to advocate for equality and accessibility for people affected by SMA. She joined the SMAUK Adult Advocacy Group in 2023 to help support people affected by SMA. She believes that by challenging misconceptions we can educate society on what a wonderful life we can live, despite our limitations. She is also a moderator on the SMAUK adult WhatsApp group. 

Dr. Alistair Emslie-Smith (MBE)Until his retirement in 2018, Alistair worked for 28 years as a GP in Dundee, Scotland. In addition, he was involved in clinical leadership and research in NHS diabetes services at regional and national levels, for which he was made MBE in 2018. He has lived with slowly progressive SMA Type 3 since childhood and has been taking risdiplam since June 2022.  He joined the Board of SMA UK in 2020.           He lives with his wife, Katy and has three adult children and one granddaughter.

He is passionate about advocating for inclusivity in our society, in particular for those, like so many of our SMA community, who live with complex physical challenges but seek be enabled to live full and unrestricted lives.

Luis has SMA Type 2 and is originally from South Africa. He say’s, “living with Spinal Muscular Atrophy has profoundly shaped my commitment to advocacy and creating an equitable world. My personal journey has provided me with a unique perspective on the importance of accessibility and inclusion. As a member of the SMA adult steering group, I am dedicated to leveraging my experiences to support our mission of fostering an inclusive and accessible society for everyone.”  

Driven by his lived experiences, he has actively participated in initiatives to raise awareness about SMA, as well as disabilities, and advocates for policies that promote inclusivity. Luis believes in breaking down barriers and creating opportunities for all individuals, regardless of their physical abilities, aiming to inspire others and drive positive change. 

CEO Kelly is an entrepreneur who has worked across multiple industries utilising her lived experience as a wheelchair user to inform her work, lead and ultimately make change.

During her career Kelly has learnt a lot about herself as a Disabled professional in many male dominated industries, namely the Football industry, running a successful concierge business and managing Football players on a daily basis, and ultimately becoming CEO and co-owner of a professional Football Club in 2015.

Kelly has a Creative background, heading up the talent side of With Not For as co-founder and CEO using her lived experience of Disability as a catalyst for her work. Kelly is passionate about representation within the media and has been featured on many major channels and within numerous publications discussing anything ranging from entrepreneurship, disability and employment, all the way through to family, work life/balance, sexual wellness and sex education. Kelly’s and her content has been featured across;

BBC Victoria Derbyshire
BBC Woman’s Hour
Channel 5
Virgin Media
BBC Three
BBC Ouch
The Sun – Career Women
METRO
USA TODAY
Cosmopolitan

Kelly’s work has been recognised through the following awards including:

Follow Kelly on instagram and LinkedIn