GraveEDUCATIONAL

How do we deal with death & OI?

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…

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STORIES

Artist with OI: Athena Cooper

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…

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MEMBERS

Meet Andrea from Chile

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…

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STORIES

Artist with OI: Natalie Lloyd

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…

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Portrait KristianSTORIES

Artist with OI: Kristian Keogh

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…

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Sofie and familyMEDICAL

Wrongly accused of child abuse

Interview with Sofie Hellström, mother of Gabriel, affected by a milder form of OI type 4 Who are you and what is your relationship to OI? My name is Sofie Hellström, I am 31 years old and I was introduced to OI in the summer 2020 when my son was diagnosed with a milder form…

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MEMBERS

Ukraine – Before and After

Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization.  The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…

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STORIES

Activist with OI: Umi Asaka

Umi, who is originally from Japan, moved to New Zealand after the nuclear disaster in Fukushima back in 2011. Today, she is living in an accessible house on South Island together with three friends. Umi talks about her life and what it means to live in New Zealand as an immigrant with a disability. My…

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