Winner of the 2024 National Diversity Award for Positive Role Model: Disability
George, 13, is a determined advocate for individuals with Spinal Muscular Atrophy. Refusing to let his disability define him, George actively campaigned for the treatment Spinraza and continues to advocate for Risdiplam to be approved on the NHS. He has spoken in the House of Commons and on major media platforms, contributing to the approval of both treatments nationally on a managed access agreement. He participated in a trial for Risdiplam in Paris with hospitals using his outcomes to educate. As a model with Zebedee Talent, George champions inclusive media representation. This incredible individual fights for accessibility rights and inclusive education inspiring his school to become accessible. George also shares his physio sessions online to help others globally.
George tells us more about the work he does and the impact it’s having
How my work affects my community
Firstly, I believe my work has specifically impacted the spinal muscular atrophy community when it comes to accessing treatment. We still need to challenge the fact that a disabled person’s life is still not viewed equally or just as worthy of saving or helping compared to someone without a disability. Highlighting that money spent on treatment for individuals impacts everyone positively (be it differently) and quality of life should not be measured by physical movement.
Getting my school made wheelchair-accessible impacted children locally with physical needs as out of over 15 mainstream schools in my borough only one was fully wheelchair accessible. But now there are two, giving children and their families at least a choice and also making sure ALL children learn in a diverse environment leading to a more inclusive world.
I hope my work modelling school uniform made a difference to how children feel when shopping and buying clothes. School is daunting enough but when there is little to no media representation, it can make you feel very alone. If people saw something in me that resonates with them, then my job is done. My media appearances I think have helped to raise awareness on accessibility issues and the lack of inclusive playgrounds, at the very least, gave those in authority food for thought.
Lastly, I believe sharing all my workout and physio sessions online has given ideas to those with disabilities who do not have access to such resources. I make sure the sessions are practical and not with expensive equipment so they’re financially accessible too.
Why I started on this journey
Campaigning and fighting for positive change runs in my family and has done for decades. My Great Great Nan was a Suffragette and fought and won the right for women’s contraception and was also the co- founder of the Children’s Act, the first Law to protect children in the UK - I think it is in my blood. That, along with my own personal experience of being disabled and the walls and challenges I face, made me want to bring about a change for the better. I’m not a person who looks to my left or my right for someone else to do it. I’ll do it!
Activities which made the most impact
I think sharing my physio and gym sessions online has impacted a lot of people worldwide. I get many messages weekly from parents saying I have given their children more confidence or the push they needed to work on their wellbeing, not just physically but mentally. I often get messages from families in poorer countries with little access to physio, equipment or knowledge around SMA and they tell me how much my videos help, especially as many of my workouts include objects that can be obtained easily such as everyday items rather than pieces of equipment costing thousands of pounds. The benefits from me working on my body along with science (the treatment I take) also shows positive outcome measures which is documented at GOSH and by me and my mum. This evidence will then be used by stakeholders (including my mum) to submit to NICE at the appraisal to help get the drug approved on the NHS for everyone with my condition.
People who inspire me
My mum and Stephen Hawking.
If I knew then what I know now
There’s nothing I’d really change as all I’ve done has led me to this point. All my experience is relevant, the good and the bad. I would probably just tell myself not to worry as it will all be OK!
My one piece of advice to others wanting to help their community
Believe in yourself. Do not be afraid to challenge people even those that should know better. Be open so people get to understand your life and feelings, hopefully then they will learn from it and make their own changes to better our world. We have to be vulnerable to educate and that takes guts.
My message for change to local and national government
In December I’m meeting the town’s Mayor and I’m also meeting the local Liberal Democrat Leader and the team. I want to work with them to make future works happening in the town to be inclusive and accessible.
My next goals
To continue with what I’ve always done but on a higher and faster scale. To show children to love yourself and be proud of who you are.
What it means to win this Award
I have already had a colossal amount of media coverage since winning, globally, nationally and locally. This has benefited me in the sense that it raises awareness of my condition which is rare, it raises questions on inclusiveness and media presentation and opens discussions up about inclusive mainstream education. So, yes, it does all benefit me but it also benefits thousands of others too. I have had lots of people wanting to interview me with advocating and awareness work booked in up until May 2025! The award has most definitely elevated my public profile and from that I can help others.
My community and school are very proud of me. I have been in all the school newsletters which reinforces to people there that they made the right decision in making it accessible for me when my local council wouldn’t. Hopefully it will encourage other schools to do the same, and maybe this award will even help my school in getting a second care suite put in next year. It would be great if that happened to help lots of other children who are physically disabled once I leave.
Highlight of the National Diversity Awards ceremony
The National Diversity Awards ceremony was AMAZING. I loved it. The Cathedral was awesome. I met so many cool people including lots of celebrities. I also loved the music and listening to other people’s journeys and achievements. I was in such shock to hear my name called out when I won, I now wish I had practiced my speech, but I genuinely never expected to win. It was all epic and I will remember it forever.