Draft:The Girl Behind the Face Initiative
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The Girl Behind The Face is a Hong Kong-based non-profit mental health initiative.[1] Its focus is finding purpose in adversity. Its mission is to challenge damaging mental health and visible difference stereotypes, and challenge the impact of Adverse Childhood Experiences[2] on individuals and parents with visible and non-visible difference.
History
[edit]The Girl Behind The Face initiative originated as a parental response to the cyberbullies who taunted Mui Thomas, a girl born with the appearance-altering condition of Harlequin Ichthyosis,[3] to kill herself.[4]
Harlequin Ichthyosis
[edit]Harlequin ichthyosis (HI) is a rare skin condition. Infants with HI are born with their bodies covered in hard, thick skin that forms large diamond-shaped plates separated by deep cracks[3]. HI is the most severe form of autosomal recessive congenital ichthyosis (ARCI).
HI is caused by a change or variant in a gene called ABCA12. This gene usually provides instructions for making a protein that's needed for normal skin development. Without this protein, the epidermis, or outer layer of the skin, doesn't develop normally. People with HI inherit two copies of the altered gene – one from each parent.
HI is very rare. According to the National Organization of Rare Disorder, about one baby in 500,000 is born with HI. Male and female infants are equally affected.[5]
Mini-Documentaries
[edit]The Thomas family has been the subject of numerous documentaries by news organisations such as CNN,[6] The Daily Mail,[7] and The South China Morning Post.[8]
Actions
[edit]Under the banner "3 Speakers, 2 Stories, 1 Message StandUp4Others Actions not Words", the initiative targets schools, employers, health care professionals, the media, policy makers, and the general public providing school, corporate and NGO Talks, international webinars, overseas talks and round table discussions.[9]
Over sixty presentations to date have included an international speaking tour to Australia sponsored by Sino Group[10] and Cathay Pacific.[11]
Awards
[edit]2016 Spirit of Hong Kong Award.[12]
References
[edit]- ^ "Member Story | Foundation for Ichthyosis & Related Skin Types (FIRST)". First Skin Foundation. Retrieved 2024-07-23.
- ^ CDC (2024-07-11). "About Adverse Childhood Experiences". Adverse Childhood Experiences (ACEs). Retrieved 2024-07-23.
- ^ a b "Harlequin-type ichthyosis", Wikipedia, 2024-07-15, retrieved 2024-07-23
- ^ "'Girl behind the face' tackles cyber bullies". South China Morning Post. 2016-06-13. Retrieved 2024-07-23.
- ^ "Harlequin Ichthyosis". First Skin Foundation. Retrieved 2024-07-23.
- ^ Hunt, Katie (2015-04-17). "Bullied but not beaten: Mui Thomas uses rare skin condition to inspire". CNN. Retrieved 2024-07-23.
- ^ Chalmers, Vanessa (2019-04-08). "Woman battling rare skin condition that causes her body to crack open". Mail Online. Retrieved 2024-07-23.
- ^ "Meet the girl behind the face". South China Morning Post. Retrieved 2024-07-23.
- ^ "Talks". THE GIRL BEHIND THE FACE INITIATIVE. Retrieved 2024-07-23.
- ^ "Sino Group", Wikipedia, 2024-03-15, retrieved 2024-07-23
- ^ "Cathay Pacific", Wikipedia, 2024-07-20, retrieved 2024-07-23
- ^ "South China Morning Post". South China Morning Post Publishers Limited. 2016-10-03. Retrieved 2024-07-23.
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