Posts

A screenshot of a zoom call with Ian Harding (left), a man with short brown hair and a full beard, and Karina Sturm (right), a woman with shaved brown hair and large, leaf-shaped earrings.
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In conversation with Ian Harding: actor, author, activist

In my role as journalist for ABILITY Magazine and as advocate for the Ehlers-Danlos community, the German organization Chronisch Cool contacted me and connected me to Ian Harding, better known as Ezra Fitz in Pretty Little Liars. Ian is…
Frontalaufnahme einer Frau mit braunen Haaren, die auf beiden Seiten zu einem Zopf gebunden sind. Sie trägt einen warmen Wintersweater.
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We Are Visible – Meet Jojo

We Are Visible is a feature-length documentary film about people all around the world living with Ehlers-Danlos syndrome. Today, I invite you to get a look at one of the incredible humans in this film: Jojo. Jojo is a mom of five children.…
Side view of a woman with short, brown hair holding a camera with a big microphone in front of her face and filming out to the ocean.Frank Marx
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Coming soon: Documentary film about the Ehlers-Danlos syndromes

The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that can affect every part of the body. We Are Visible wants to show the full picture of the condition including the complex presentation of symptoms, to the complications…
Karina is holding a sign saying: Yes, we care!

Yes, we care! – A campaign for children with rare diseases

The Care-for-Rare Foundation contacted me a few weeks ago and asked if I wanted to join their new campaign. Of course, I wanted to! And I would like to recommend this project to you. Why? Because the Care-for-Rare Foundation is committed to…