GEORGE TAPPENDEN
Nominee Profile
Location: Tunbridge Wells
I'm twelve years old with Spinal Muscular Atrophy Type 2 (a muscle wasting condition). I decided from a young age to never allow my disability to dictate my life.
I am a 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 & BBC News, live Radio & was interviewed for local & national newspapers.
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.
I was also a part of 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 childrens 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 & was used by a leading supermarket in every store in the UK, one of the first to use a powerchair. Lots of photos were sent in of children standing next to me in the store with a disability. 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.
I also fought to remain in mainstream education & spoke about the importance of inclusivity & choice. This I won with the help of 'St Gregory's Catholic School' who made adaptations for me which will pave the way for others to.
On the 18th May a National News Investigating Journalist Team are coming to film me for the day for a mini doc on how the Government is failing children with disabilities. They will focus on accessibility with me and it will be aired the end of May. They ended up filming me for nine hours.
I am also speaking at Grosvenor Hotel London to buisnesses about disabilities in June and how their help can provide the changing equipment.
I have many appointments that I attend & I also do weekly physio sessions. I upload parts of these sessions to my social media platforms 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, loosing strength and abilities, to a trial, a spinal fusion and then to missing alot 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'.
Since treatment I now play the drums and am studying for my grade one exam (which is amazing considering six years ago I lost so much strength I could not push to lego pieces together), and I am also doing my first public speaking exam with LAMDA so I can advocate better for others & myself. I am a Disability Ambassador also.
No change for the better has ever come from doing nothing.
I am a 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 & BBC News, live Radio & was interviewed for local & national newspapers.
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.
I was also a part of 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 childrens 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 & was used by a leading supermarket in every store in the UK, one of the first to use a powerchair. Lots of photos were sent in of children standing next to me in the store with a disability. 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.
I also fought to remain in mainstream education & spoke about the importance of inclusivity & choice. This I won with the help of 'St Gregory's Catholic School' who made adaptations for me which will pave the way for others to.
On the 18th May a National News Investigating Journalist Team are coming to film me for the day for a mini doc on how the Government is failing children with disabilities. They will focus on accessibility with me and it will be aired the end of May. They ended up filming me for nine hours.
I am also speaking at Grosvenor Hotel London to buisnesses about disabilities in June and how their help can provide the changing equipment.
I have many appointments that I attend & I also do weekly physio sessions. I upload parts of these sessions to my social media platforms 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, loosing strength and abilities, to a trial, a spinal fusion and then to missing alot 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'.
Since treatment I now play the drums and am studying for my grade one exam (which is amazing considering six years ago I lost so much strength I could not push to lego pieces together), and I am also doing my first public speaking exam with LAMDA so I can advocate better for others & myself. I am a Disability Ambassador also.
No change for the better has ever come from doing nothing.