Mariann Vegh's son Erik has Asparagine synthetase deficiency (ASNSD) - a rare, neurometabolic disease that has no treatment. Mariann and her husband refused to give up and are now the driving force behind a major research effort to find a cure.
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I am an experienced video journalist passionate about making complex topics accessible and engaging through compelling multimedia storytelling. Focused on social and environmental issues, I produce various video formats on a wide range of topics, specialising in impactful explainer videos with motion graphics and stop-motion animation.
During my studies in cinema, English literature and journalism, I’ve gained experience in radio, television, and print across Switzerland. After working with the Locarno Film Festival’s image & sound team, I joined SWI swissinfo.ch in 2018 to produce local and international reportages.
I report on the Swiss pharmaceutical industry and healthcare topics such as access to medicine, biomedical innovation, and the impact of diseases like cancer.
I grew up just outside San Francisco and studied international affairs with a focus on development economics and healthcare policy. Prior to joining SWI swissinfo.ch in 2018, I was a freelance journalist and a researcher on business and human rights.
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Born in Italy and raised in Africa, I now call Switzerland home. I studied film directing at the Italian National Film School and worked as a documentary editor and director/producer in Berlin and Vienna. I specialise in crafting multimedia into engaging narratives.
As pharmaceutical companies turn a blind eye to rare diseases because of the low potential return on investment, parents of children with rare diseases are taking matters into their own hands. This is the story of one of those parents – Mariann Vegh and her son Erik.
Inspired by the story of a little girl in the United States, Mila, and the drug MilasenExternal link developed specifically for her, Mariann and her husband Balazs created the ASNSD Research Association to fund and coordinate research into the disease. The Switzerland-based association is now bringing other families of children with ASNSD together from around the world, fundraising for research, and advancing drug development.
In this short film,External link Swissinfo takes an intimate look into Mariann’s day-to-day life, the struggles of caring for a child with a rare disease, and what gives her hope that one day there will be a treatment for ASNSD.
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