OIFE’s 5th Topical Meeting “Balancing Life with OI” took place in Stockholm, Sweden, in June 2023. The main topic of this international conference was pain in OI and its impact for instance on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Here are some impressions from participants: Alessandra Tolaccia My name is…
Interview with Nick Bishop, professor of paediatric bone diseases at the University of Sheffield, UK Who are you and what is your relationship to OI? My name is Nick Bishop and I am professor of paediatric bone diseases at the University of Sheffield in the UK. I’ve worked here for the last 25 years (nearly).…
“Disability Burn-Out”: Internalized Ableism and its consequences! By Raul Krauthausen, disability activist with OI A disability can be stressful and sometimes trigger burnout. Often, one’s own internalized ableism plays a major role – in other words, the pressure of having to gain a raison d’être through performance and functionality. This can rule a lifetime. It…
Interview with Jay Manuel, Music Producer and Content creator, Georgia, USA Meet Jay “Mini Producer” Manuel, a music producer and content creator based in Georgia, USA. Despite being hard of hearing and living with Osteogenesis Imperfecta Type 3 and Autism, Jay has dedicated his career to breaking barriers and representing young professionals with disabilities in…
By Ute Wallentin, OIFE Social Network and Board member of the German OI-Association (DOIG) When OI-children or adults or members in general from our association die, how do we want to deal with the news of their death? And if they die (much too) young, what offers can we make to the surviving relatives? Ute…
Athena Cooper is a visual artist and creativity coach based in Calgary, Canada. Self- taught as an acrylic painter, Athena’s paintings are explorations of what it means to live an extraordinary, ordinary disabled life. Please tell us a bit about yourself! I’d describe myself as someone who has had a pretty wide-ranging set of experiences and…
Interview with Andrea Medina, Representative of OIFE’s Associate Member Chile Who are you and what is your relationship to OI? I’m the founder and chairwoman of the board of Fundación de Osteogénesis Imperfecta Chile (FOICH). I have OI myself, and that is why my interest was born in creating an organization that brings together people with…
Interview with Natalie Lloyd, author of bestselling novel Hummingbird I’m Natalie and I’m an elder millennial (born in 1981). I live in Tennessee with my husband, Justin, and our three spoiled dogs. In college, I studied journalism, but creative writing was always my first love. I feel very blessed to be able to say writing…
Kristian is an Australian professional video editor and graphic designer. He is using a wheelchair, but this didn’t stop him from making a dream come true: performing with the Bangalow Theatre Company doing the Musical “RENT”, his favorite musical. Kristian also talks for instance about daily challenges and the situation of people with a disability…
