Swedish Sanfilippo Support Group Gives $23,000 to Cure Sanfilippo for Type C Program

October 17, 2019

The first-ever gene therapy clinical trails, testing whether the treatment will work in children, are happening for Sanfilippo Syndrome Type A and B after decades of work by scientists, families, and foundations, including Cure Sanfilippo Foundation. 

Enabling a clinical trial to happen for Sanfilippo Syndrome Type C is among the priorities of Cure Sanfilippo Foundation. And families of children around the world with Type C are helping. 

Recently, Kampen Mot Klocken (Fight Against the Clock), a Swedish Sanfilippo group, raised $23,000 and donated it to Cure Sanfilippo in honor of Eyra who has Sanfilippo Syndrome Type C.

Kampen Mot Klokan, "Race Against the Clock," a Swedish Sanfilippo group Eyra Wieslander, living with Sanfilippo Type C

Kampen Mot Klocken raised the funds through creative and sometimes-frigid events throughout the year. 

Christmas Day polar dip fundraiser for Kampen Mot Klockan

Eyra Wieslander and her mom Ylva, living with Sanfilippo Type C“These funds were raised THANKS to volunteers who arranged dance shows, running events, a farmers day, and even a Christmas Day dip in the freezing ocean!” said Eyra’s mom . “But most of it comes from many small donations from all over Sweden – people who just wanted to help us. We have so much gratitude to both our amazing volunteers and donors.”

“These funds will go directly toward moving the Type C program forward toward a hopeful gene therapy clinical trial,” said Foundation President Glenn O’Neill. “Cure Sanfilippo is so thankful for this support from around the globe.”

Eyra’s family is one of many Type C families globally working to support the Foundation’s Type C program, including the partner families of Connor, Jonah, Mia, and Saga & Maia

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