Alex and JuanJo are part of The Pongo Bongo, a social communication agency specialising in helping small charities.
1 in 10,000 babies are born with Stickler Syndrome, a condition that effects the entire body: joints, hearing and sight. Alex and JuanJo first heard about Stickler Syndrome in December 2014 when we were working on a campaign to raise awareness and funds for people affected by this condition
With events such as RARE DISEASE DAY doing much to raise the profile of rare diseases the team at The Pongo Bongo wanted to do their bit and take an active part in Rare Disease Day 2018. They have teamed up with unbound.com to create this special picture book for children. Through illustrated tales, they aim is to help children and adults, whether they are directly affected or not, to understand this rare disease and to improve the social experiences of those who are, by raising awareness.
A version of this picture book has already published in Spanish telling the story of Little Anton (https://vimeo.com/196412393). Through the success of this campaign they have been encouraged to bring the project to the English speaking rare community.
They have launched a crowd funding campaign to raise the funds necessary to make this project a reality. Through this picture book we aim to raise awareness in a positive and age appropriate way.
You can visit their crowdfunding campaign page to pledge your support. https://unbound.com/books/little-mia
Rare Revolution Editor