STORIES

Artists with OI: Erwin Aljukic

Erwin Aljukic is an actor, dancer, speaker and fashion journalist. Since 1998 he can be seen on TV, in the cinema and at the theater. In addition to acting, he studied fashion journalism and has been working as a freelancer ever since. In 2014 he devoted himself to contemporary dance. Aljukic has been a permanent…

READ MORE
STORIES

Life as a “Shadow Child”

Often siblings of children with a chronic illness are called “shadow children” because they live in the blind spot of their parents. They are often alone with their grief and put their own needs aside for their siblings’ needs. My name is Kristine Holm Laursen, but just call me Krisser. I am now 26 years…

READ MORE
OIFE

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

READ MORE
A 3D printed person inside a plastic bag as part of art exhibitEDITORIALS

Tired, fatigued or just lazy… ?

It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning  nightmare. Needing help with most of the  practical stuff because of my disability, doesn’t make it any better. For every box that needs to  be moved or carried, every lamp that…

READ MORE
STORIES

Rick Brink – Minister with OI

Since 2019, the Netherlands has an unofficial Minister of Disability Affairs. Rick Brink who has OI and is using an electric wheelchair, won this appointment during the broadcast of the television programme ‘De minister van Gehandicaptenzaken’ (The Minister of Disability Affairs). Brink was elected by a jury, including former cyclist Leontien van Moorsel, cabaret artist…

READ MORE
Translate »