Meet Young Advocate Simon Hoskins

Meet eight-year-old Simon Hoskins, whose bright smile and playful spirit captured hearts at the recent Crystal Ball fundraiser in Vancouver. Dressed in a tuxedo and stylish Converse sneakers, Simon danced the night away, representing the future of pediatric clinical trials at BC Children's Hospital.

Family Mission: Raising Awareness for Morquio Syndrome

Simon, who has been diagnosed with mucopolysaccharidosis (MPS) Type IV, commonly known as Morquio syndrome, and his family—including his twin sister Isabel, older brother Spencer, and dad Trevor—are on a mission to raise awareness and funds to support research into this rare genetic disorder. Emphasizing the power of community, their Cure MPS campaign has already exceeded $100,000 in its inaugural year, sparking vital conversations around this condition throughout Greater Victoria and beyond.

A Star in the Making: The Small but Mighty Campaign

After undergoing significant surgery earlier this year, Simon used his experience at Sunny Hill Health Centre to claim his spot in the 'Small but Mighty Campaign.' A music therapist recognized Simon's charisma and recommended him for the campaign ads, where he could help shed light on how Morquio syndrome affects children, including challenges like skeletal abnormalities and short stature.

The Importance of Clinical Trials for Children

Clinical trials are a significant focus for families like Simon's, as they are crucial for developing future treatments. 'Clinical trials are essential in pediatric medicine, especially because most current treatments are borrowed from adult applications, which may not be safe for children,' said Dr. Quyhn Doan, senior executive director at BC Children’s Hospital Research Institute. 'Children represent a substantial percentage of our population yet are often neglected in clinical research.'

Creating a Clinical Trials Super Hub

The journey to create a Clinical Trials Super Hub at BC Children's Hospital was once a distant dream, but thanks to community support and events like the Crystal Ball, it is now gaining momentum. Dr. Doan highlighted the importance of the campaign, stating, '[Simon] truly understood the idea behind the clinical trial super hub.' This initiative aims to optimize the clinical trial landscape for children, making it easier to run trials and ultimately bring new treatments to market.

Fundraising Success and Community Support

The recent Crystal Ball event raised over $4 million for the super hub, with Simon as one of the stars. His presence at the gala and his subsequent efforts on Giving Tuesday have kept the fundraising enthusiasm alive, all dedicated to finding new treatments for various childhood diseases.

A Vital Step for Pediatric Healthcare

Not only does this campaign align with Simon's love for performance, but it also represents a vital step toward ensuring children receive safe, effective treatments tailored to their unique needs. BC Children's Hospital has already laid the groundwork for the super hub, employing a dedicated team of experts committed to advancing pediatric research.

Continuing the Fight for Children's Health

With an ongoing fundraising goal of $10,000, Simon and his family are just $255 away from achieving this target. 'It’s about finding new treatments and cures for kids’ diseases,' explained his mother, Becs. Simon's determination to make a difference in the world is clear, and he is well on his way to shattering expectations again. Stay tuned for more inspiring stories as this brave young boy continues his journey, proving that even the smallest voices can drive significant change.