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Why fit in when you were born to stand out!

This presentation was delivered to international delegates, consisting of children, young people, families, young person advisory group leaders and industry representatives at the 4th iCAN Research and Advocacy Summit in Edinburgh, UK on Tuesday 10 July 2018.

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Why fit in when you were born to stand out!

  1. 1. WHY FIT IN WHEN YOU WERE BORN TO STAND OUT! Simon Stones @SimonRStones
  2. 2. 3,000,000,000Young people under 24 years old around the world CIA World Factbook World Demographics Profile 2018
  4. 4. Easton LaChappelle (22) He made his first robotic hand at the age of 14, using LEGO and fishing wire. He met a young girl aged 7 – her prosthetic cost $80,000. He made it his mission to help people like that little girl and decided to create a functional prosthetic limb that cost under $1,000. NASA asked him to work on their Robonaut team. In January 2018, his company attracted nearly 400 investors in 2 weeks!
  5. 5. Malala Yousafzai (20, 21 tomorrow!) Malala blogged for the BBC about life under the Taliban and her desire to return to school. She and her family were forced to flee their home as the Pakistani army returned. Malala continued her fight for education rights and, in 2012, aged 15, masked gunmen boarded her school bus and shot her in the head. She survived, but she and her family moved to England, where she returned to school in 2013 and continued her fight for girls' rights to education. In 2014, at the age of 17, Malala became the youngest winner of the Nobel Peace Prize. She's now a student at the University of Oxford and continues to travel globally in support of women's rights.
  6. 6. Louis Braille (12) Louis was only 12 when he learned of a communication system used by the French army, which laid the groundwork for his own system of reading and writing used by the blind. He completed his alphabet of raised dots by the time he was 15. It has since spread throughout the world and is still in use today.
  7. 7. My journey 1996 Diagnosed with juvenile idiopathic arthritis aged 3 2008 Diagnosed with Crohn’s disease aged 14 2012 Diagnosed with fibromyalgia aged 18 Plus a few other things along the way…
  8. 8. “I did not qualify for mitigating circumstances during exams because I should be used to dealing with my long- term condition” “I was unable to participate in contact sport, but I was forced to change into a sports kit and stand at the side of the pitch” “I can’t keep up with writing in class… but you said that if you give me handouts, you’d have to do that for everyone else and that is not fair”
  9. 9. I am a person. Not a health problem.
  10. 10. RESEARCH!
  11. 11. Paediatric Rheumatology Clinical Studies Group The University of Manchester Primary Care Group The University of Manchester Musculoskeletal User Group European League Against Rheumatism Royal College of Paediatrics and Child Health Your Rheum Patient Research Ambassador Initiative iCAN eYPAGnet GenerationR Alliance RAiISE Carion Fenn Foundation Translate Savvy Cooperative WEGO HealthFibromyalgia Action UK European Network of Fibromyalgia Associations European Network of Arthritis in Children
  12. 12. When should young people be involved in research? Questions Applications and grants Ethics Doing the research Training Advising Analysing Telling others You!
  13. 13. The TRECA study: TRials Engagement in Childrenand Adolescents @TRECAStudy
  14. 14. It’s our Responsibility To stand up And speak out
  15. 15. You are part of a movement… around the world!
  16. 16. How are young people involved in research? Social media Interviews / focus groups Co-researcher • Youth Councils • Young Person’s Advisory Group • Patient Research Ambassadors • eYPAGnet • International Children’s Advisory Network • Patient associations and charities Existing groups and links Advisory group
  17. 17. “No matter what people tell you, words and ideas can change the world.”