Maria Barthel’s annual fundraisers have become a bit of a tradition for the German-speaking Glut1 community. Every year in the run-up to Christmas, the mother of a 4-year-old girl with Glut1 Deficiency Syndrome launches a fundraising initiative that also serves to shine a spotlight on life with the condition – and this year she set a new record and reached her target of €450 in about 12 hours!
Maria believes that fundraising is most effective when a specific goal is given, so that donors know exactly what their money will achieve. At the same time, this can be used to inform about life with Glut1 and the challenges families face in a relatable and memorable way.
This year’s fundraiser will pay for the distribution of ketogenic croissants from Italian company LeGamberi to Glut1 families. They are beloved by many Glut1 patients who have to follow a ketogenic diet, the only known treatment for the condition. As these are a specialist product, they come with a higher price tag than the ones you can pick up at your local bakery.
These croissants are just one example of the increasing number of specialist foods that are available nowadays, but tend to have higher prices than their standard equivalents. Yet these foods are of special importance to the often younger patients who love the experience of eating something that comes in a package – just like everybody else’s food! At the same time, they make life easier for the carers, who shoulder the burden of the preparation-intensive ketogenic diet.
Previous campaigns were centered around a keto-friendly chocolate advent calendar and a ketogenic cooking book for children. Any surplus donations will go to the German patient organisation, Förderverein Glukosetransporter(GLUT1)-Defekt e. V.
You can see the fundraiser page here – donations are still coming in and gratefully accepted.