Shire Announces Winners of Spotlight on Gaucher Film Contest to Mark International Gaucher Day
October 9, 2015
Shire plc is pleased to announce the winner and runner up of the Spotlight on Gaucher film contest on the occasion of International Gaucher Day (IGD). The film contest, which was supported by the European Gaucher Alliance (EGA), encouraged people whose lives have been touched by Gaucher disease to share a video to raise awareness of the condition and communicate a message of hope through shared experience. A winner and runner up were selected from the 13 entries submitted from across the world including Argentina, Columbia, Israel, Japan, Jordan, Russia, Rwanda and the United States.
The winning entries are:
1st place: ‘My Daughter‘ (Argentina) – A story through the generations told via family photos. Nora looks back at her daughter Juliana’s Gaucher disease journey from diagnosis in childhood through to her current life in adulthood raising her granddaughter.
Runner up: ‘Morena‘ (Argentina) – The story of young Morena from her diagnosis of Gaucher disease through to the present day and her passion for figure skating.
“We would like to thank everyone who entered the contest and for sharing their experience of Gaucher disease with the community,” said Tanya Collin-Histed, Director of Treasury and Administration, European Gaucher Alliance. “October 1 marks International Gaucher Day, a day dedicated to raising awareness of Gaucher disease, and each video entered will also help to raise awareness of this rare condition.”
The winning videos were chosen by an independent external judging panel including representatives from the EGA, The Ma’aleh Film School, and the Gaucher disease medical and/patient community. Judging criteria focused on video creativity, storytelling and awareness raising. The winner and runner up will receive an official contest certificate and are being recognised as part of the IGD activities organized by the EGA.
“The Spotlight on Gaucher film contest has provided a platform for those impacted by this rare condition to creatively articulate the effect Gaucher disease has on their lives,” said Emmanuel Dulac, Head of the Rare Diseases Business Unit at Shire. “At Shire, we are committed to working with the community to raise awareness of Gaucher disease. Through initiatives that give patients and the community a voice, we hope to unite those living with rare diseases and help to raise awareness of these life-altering conditions.”
For more information on the Spotlight on Gaucher film contest and to watch the video entries, please visit:http://www.spotlightongaucher.com or http://www.youtube.com/spotlightongaucher.
About Gaucher Disease
Gaucher disease is an inherited rare disease that affects approximately one in 50,000 people. It is caused by the deficiency, absence or incomplete functioning of an enzyme called glucocerebrosidase, which normally metabolises a fatty substance called glucocerebroside. This causes a build-up of lipids in cells, resulting in progressive damage to tissues and major organs including the spleen, liver, bones and brain. Both men and women are affected by Gaucher disease and although it can occur in any racial or ethnic group, it is more common amongst people of Ashkenazi Jewish descent, where it affects around one in 850 people.
About the European Gaucher Alliance (EGA)
The EGA is a pan-European umbrella group representing the interest of Gaucher patients and those of non for profit Gaucher Patient Groups throughout Europe and elsewhere in the world. For more information visit: http://www.eurogaucher.org.
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