George Tappenden

I am an avid campaigner & took part in a community campaign (one of the biggest this country has seen for a rare condition) to fight for the first ever treatment for Spinal Muscular Atrophy (spinraza). I have protested outside NICE, spoke in the House of Commons, ITV, Sky & BBC News, live Radio & was interviewed for local & national newspapers including The Daily Mail. ’ I then travelled to Paris for just under two years to participate in a trial for the first oral drug for SMA and second ever treatment (risdiplam), whilst still helping to campaign for spinraza in the UK. The evidence & my experience with risdiplam was then used (along with others) at the appraisal with NICE here in the UK where it was approved via a Managed Access Agreement and so was spinraza. My photo now appears in the risdiplam instruction booklet for the drug & I was chosen to speak at the pharmas last seminar to give a insight into my life with SMA & how treatment has helped me – hoping to help others and reinforce the need for continued research & awareness in to SMA. They also spent a day filming my life to show a true insight. I also took part in a case study for The Royal Brompton Hospital to show how bi -pap can improve quality of life and fatigue and not just be used for assisted breathing.

I am very passionate about inclusive media representation & the difference it makes to children’s self-esteem & self body image who have disabilities, so I model with Zebedee Talent. One of my jobs was a life size photo taken of me in my wheelchair & it was used by a leading supermarket in every store in the UK, one of the first to use a power chair. I also appeared in their TV advert.

I fight for accessibility rights in my town. I have done interviews & spoken with MPs – even to get my own adapted home purpose built due to lack of accessible housing. I also fought to remain in mainstream education & spoke about the importance of inclusivity & choice. This fight I won with the help of ‘St Gregory’s Catholic School’ who made adaptations for me which will pave the way for others. I now speak regularly to all year groups in assembly about the importance of Inclusion within school and friendships. On 18th May a National News Investigating Journalist Team from Sky came to film me for the day for a documentary on how the Government is failing children with disabilities. They focused on accessibility with me and this has been aired several times already this year.

In July I spoke on stage at The Grosvenor Hotel London to businesses about my condition and the physical and emotional impact it causes me and those around me. A video was also played to two thousand individuals showing a insight into my daily life having had a film crew at my house for two days prior to the event. This event raised over £400,000 for the Variety Children’s Charity.

I have many appointments that I attend & I also do weekly physio and PT sessions. I upload parts of these sessions to my social media platforms (that have eleven thousand followers altogether) to inspire and motivate others, help with ideas and for those that cannot access physio with my condition across the globe. The videos have also been used by Great Ormond Street Hospital, John Florence Orthotics, pharmaceutical companies and Professor Bush from the Royal Brompton Hospital in talks and seminars to educate others on my condition across the world.

I have gone through quite a bit from illness, losing strength and abilities, to a trial, a spinal fusion and then to missing a lot of my education & time with friends. However I still do very well at school and have won two awards since starting Secondary one being for ‘Fantastic Influence & Work’ and came in the top percent for all my end of year exams.

Since treatment I now play the drums and achieved distinction in my grade one this year (which is amazing considering six years ago I lost so much strength I could not push two Lego pieces together), and I also did my first public speaking exam with LAMDA so I can advocate better for others & myself. I achieved distinction in grade 3 for this also this year.

Finally I was awarded the Positive Role Model Award for Disability this year at the 2024 National Diversity Awards.

Advice I was given was to be accepting of my disability and be proud. To know I can do anything but to do it my way. My motivation is to make change for the better and to make the world a more inclusive and accepting place. My message is to never give up. Always challenge and push boundaries. No just isn’t a option.