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.

1. WHY FIT IN WHEN YOU WERE
BORN TO STAND OUT!
Simon Stones
@SimonRStones

2. 3,000,000,000Young people under 24 years old around the world
CIA World Factbook World Demographics Profile 2018

3. “YOU’RE NEVER
TOO YOUNG TO
CHANGE THE
WORLD”

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. 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. 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. 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. “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. I am a
person.
Not a
health
problem.

10. RESEARCH!

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. When should young people be involved in research?
Questions
Applications and
grants
Ethics
Doing the research
Training
Advising
Analysing
Telling others
You!

13. The TRECA study: TRials Engagement in Childrenand Adolescents
@TRECAStudy

14. It’s our
Responsibility
To stand up
And speak out

15. You are part of a movement… around the world!

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. “No matter what
people tell you,
words and ideas
can change the
world.”