October 29, 2018

Our FREYA!!!

Positive Exposure was invited to Sweden by Ann Nordgren, MD, PhD, a Professor of Clinical Genetics at Karolinska Institute and senior consultant and Project Manager at the Karolinska Center for Rare Diseases (KCRD) at Karolinska University Hospital in Stockholm.  Dr. Nordgren learned about Positive Exposure upon meeting Rick in 2015 at the Coffin Lowry Syndrome Foundation conference in Wellington, FL.  At that time, the idea of a Positive Exposure in Sweden collaboration was discussed — and it finally came to fruition this year!

The Research Team at Karolinska Center for Rare Diseases (KCRD)

The whirlwind of activity began in Stockholm with a photo shoot of researchers at the Rare Disease Research Lab at Karolinska University Hospital, one of Europe’s premier health facilities. This was followed by a Positive Exposure: Seeing Beyond Diagnosis presentation and a photo shoot with Ambassadors living with unknown rare diseases as well as their families in conjunction with the Wilhelm Foundation.

Founded by Helene and Milkk, parents to Wilhelm, Hugo and Emma who passed away from an undiagnosed degenerative brain disease in their youth, the Wilhelm Foundation is devoted to seeking support to help children with undiagnosed brain diseases. With an estimated 500 children in Sweden, 27,000 in Europe and 21,000 in the USA currently living with undiagnosed brain diseases, Helen and Milkk are on a mission to spread awareness. As they explain, “When our children were still alive, we visited or sent samples to doctors worldwide, but nobody could help our children. Knowing that there are many families that will go through the same ordeal as us – where medical doctors cannot explain what is wrong, or in worse case scenario, where the child dies from a disease that nobody can identify and where nobody can help the child survive – has led us to want to help these families. We live to help the children who live today with undiagnosed brain diseases.”

After spending time with this incredible community in Stockholm as well as exploring the possibility of a Positive Exposure Exhibition at the Fotografiska Museum, we flew to the west coast of Sweden for a Positive Exposure presentation and photo shoot at Ågrenska House and Foundation. Located on Lilla Amundön, an idyllic island in Gothenburg’s picturesque archipelago, century-old Ågrenska conducts research and provides programs for children, teenagers and adults with rare diseases, their families and professionals supporting the family. Since 2005, Ågrenska has also been home to the National Competence Center for Rare Diseases in association with Rare Diseases Sweden.

As one can imagine, the two days spent at Ågrenska were beyond amazing!  And it turns out that serendipity came into play as two cousins to our Executive Director, Liz Matejka-Grossman, attend Ågrenska and just happened to participate in the photo shoot too — unicycle and all!

The purpose for photographing and gathering stories from researchers, ambassadors and families in both Stockholm and Gothenburg is to create an exhibition that captures the human spirit as well as connects one person to the next.  This unique exhibition will show the human side of the scientists in the room by sharing a little bit about themselves while also explaining what led them to become a researcher in their particular field of interest. Likewise, the exhibition will enable Ambassadors and their families to talk about life from their perspective  — their likes, their dislikes, their favorite rock band — in addition to discussing the positive impact of KCRD, Karolinska University Hospital, the Wilhelm Foundation and Ågrenska.

Meet Freya, our newest PEARLS Ambassador: