Becs Hoskins has a happy image of her eight-year-old son B次元官网网址� tucked into a tux paired with old-school, converse-style hightops B次元官网网址� dancing the night away with a grin.

Simon, 8, stayed up til the wee hours of the morning at the Crystal Ball fundraiser in Vancouver, putting on his usual charm as he served as one of many young faces of a campaign to create a pediatric clinical trial super hub at BC ChildrenB次元官网网址檚 Hospital.

Simon lives with mucopolysaccharidosis (MPS) Type IV commonly called Morquio syndrome. Instead of dwelling on the negatives, the family B次元官网网址� including twin sister Isabel, older brother Spencer and dad Trevor B次元官网网址� focuses on how to raise awareness and funds to research the rare, progressive, genetic disorder.

In the first year, their Cure MPS campaign raised far beyond the $100,000 goal and spurred myriad conversations in Greater Victoria and well beyond.

After he had major surgery earlier this year, Simon spent significant time in rehab at Sunny Hill Health Centre where his music therapist suggested heB次元官网网址檇 be great in the Small but Mighty Campaign ads.

Morquio symptoms include skeletal abnormalities, including short stature, making Simon truly B次元官网网址渟mall but mightyB次元官网网址�, his mom noted.

He and his twin sister Isabel did a photo shoot for the campaign where they got to know Simon and learned more about his genetic condition.

He already undergoes weekly enzyme transfusions to slow progression, but it is not a cure.

Clinical trials are key to SimonB次元官网网址檚 future.

They invited him into the Crystal Ball Designation B次元官网网址, an inviting piece shown during the event to inspire donors to support the development of the BC ChildrenB次元官网网址檚 Hospital Clinical Trials Super Hub.

The idea felt like a dream a few years ago, said Dr. Quyhn Doan, senior executive director of BC ChildrenB次元官网网址檚 Hospital Research Institute and Congdon Family Hospital Chair in Research at BC ChildrenB次元官网网址檚 Hospital.

B次元官网网址淣ow itB次元官网网址檚 launched and thatB次元官网网址檚 thanks to the kids, the community and the families that have rallied around it and fundraised for it,B次元官网网址� she told the Oak Bay B次元官网网址.

SheB次元官网网址檚 impressed with the children lending their character and knowledge to the campaign B次元官网网址� describing Simon in particular as vivacious, engaging and interested in people.

B次元官网网址淚tB次元官网网址檚 not a given, sometimes when we work with children,B次元官网网址� Doan noted. B次元官网网址淢ost kids are usually a little less out there and for him to be interested in other people, and asking questions of adults, and just engaging B次元官网网址� that is special.B次元官网网址�

It helps that Simon, particularly for a kid his age, has the perspective to understand the program's value.

B次元官网网址淐hildren are 15 to 20 per cent of our population depending on where you are but theyB次元官网网址檙e 100 per cent of our future,B次元官网网址� Doan said.

Clinical trials have been integrated into the kids' oncology ward forever; they're how doctors learn whether treatments work, how safe they are and how best to provide them.

B次元官网网址淚n other conditions, the way we treat them is extrapolating from adult treatments B次元官网网址� which can be harmful in children,B次元官网网址� the doctor said. 

B次元官网网址淐linical trials are very rare and limited in the pediatric population and we thought thatB次元官网网址檚 not right.B次元官网网址�

The biggest difficulty involved is the expense. Typically, the pharmaceutical industry doesnB次元官网网址檛 see a lot of profit so building infrastructure, expertise and capacity to host a hub of clinical trials would make it a more viable option.

B次元官网网址淭hat is expensive,B次元官网网址� Doan said.

She pitched a dream and BC ChildrenB次元官网网址檚 Hospital was responsive. The community there rallied and kicked off the campaign with the Crystal Ball in 2023, and continued that pitch with this DecemberB次元官网网址檚 gala where Simon B次元官网网址渨as really the star of the show,B次元官网网址� Doan said.

B次元官网网址淚 was so impressed that he took it on. He really, truly understood the idea behind the clinical trial super hub.B次元官网网址�

Crystal Ball 2024 raised more than $4M in support of the super hub, in part thanks to Simon who also spoke at the event. He built on that momentum for Giving Tuesday days later, dedicating the ongoing Cure MPS fundraising to the cause.

B次元官网网址淚tB次元官网网址檚 about finding new treatments and cures for kids diseases so thatB次元官网网址檚 where we put our effort,B次元官网网址� Becs said. B次元官网网址淚tB次元官网网址檚 building on his home away from home at the hospital.B次元官网网址�

It helps that the campaign blends his love of acting and being in front of the camera B次元官网网址� B次元官网网址渋n line with who Simon is and how Simon wants to thrive in the world,B次元官网网址� his mom added.

The clinical trial super hub already has a foundational expert team in place B次元官网网址� about four people on the quality and regulatory, two clinical trial nurses, a couple of pharmacy staff and a lead on a coordinator in the laboratory for dedicated research work. They hope to add a couple of dedicated technicians.

By Friday, Dec. 20, SimonB次元官网网址檚 campaign was $255 shy of the $10,000 target B次元官网网址� but heB次元官网网址檚 become accustomed to smashing goals.

Find the campaign online at .