The Million Dollar Bike Ride wasn’t the only charity event to support FD/MAS research this May. FD/MAS research in Holland received a boost that same weekend from the Huiseid Festival, an outdoor music and merriment festival held in Warmenhuizen, the Netherlands.
The festival includes four different stages with live music and dance performances throughout the
weekend, as well as recreational soccer and other activities available for kids. In addition to the traditional music festival, this year Huiseid also organized a pre-festival event specifically designed around the needs of those with disabilities.
Proceeds from the event go to support three different charities: the Cystic Fibrosis Foundation, Bones4Kids, and the Leiden University Medical Center through the Bontius Foundation. Through the generous support of FD/MAS patients, their friends and family, and the Huiseid Festival staff, donations to Leiden University Medical Center will go directly to research on fibrous dysplasia.
Just as the 2018 Million Dollar Bike Ride had a record breaking year, so to did the Huisweid Festival. They raised over 125,000 euros to be split between the three charities!
The FD/MAS community in the Netherlands has supported important research at Leiden University Medical Center. For example, funds the community raised were behind the analysis that established a tentative connection between FD/MAS and breast cancer, among other recently published research. The Bontius Foundation provided financial support for graduate students like Bas Majoor, who recently defended a doctoral dissertation on fibrous dysplasia.
Even though the presentation of FD/MAS can vary dramatically from patient to patient, and health systems are very different from country to country, the FD/MAS patient community as a whole has many of the same obstacles and goals the world over. It is thrilling to see the Dutch community come together at this fun event in support of research on FD/MAS.