Role of the Cooper Robertson Foundation in the funding ecosystem
The Cooper Robertson Foundation (CRF) is a fully registered Canadian charity established by Cooper Robertson’s family to respond to the challenges of Tuberous Sclerosis Complex (TSC). The foundation’s purpose is twofold: to increase public awareness of this rare genetic condition and to raise funds that directly improve care and research for children living with TSC.
Rather than running a competitive grant program, CRF has chosen a focused funding model. Each year, all funds raised are donated to the TSC Clinic at Toronto’s Hospital for Sick Children (SickKids). This long‑term partnership allows the clinic to enhance multidisciplinary care in neurology, nephrology, cardiology and allied health, and to pursue strategic priorities that would otherwise lack sufficient funding.
Funding priorities and supported initiatives
Annual donations from the foundation support concrete initiatives at the SickKids TSC Clinic. Donor dollars have funded the creation and continuation of key roles such as the Patient or Nurse Navigator, who coordinates appointments, streamlines access to services and provides education and resources to families. CRF funding also strengthens the TSC research infrastructure, including the development and expansion of a patient registry and database that underpin future clinical trials, grants and industry collaborations.
Over the years, the foundation has reported significant yearly contributions, with detailed amounts shared publicly on its website and during cheque presentations. These funds help reduce wait times, expand the clinic team, support staff training and conference participation, and enable Ontario‑wide networking among TSC professionals through symposia and collaborative events.
Community engagement and fundraising model
CRF mobilizes “Cooper’s Crew” — a broad community of family, friends, TSC families, local businesses and corporate sponsors — through signature events and campaigns. Its flagship initiative, the annual Run With Coops, combines a community run and children’s 1K with peer‑to‑peer fundraising. Additional support comes from charity golf tournaments, local business collaborations where a portion of sales is donated, and individual and corporate giving.
The foundation issues official tax receipts for donations and works with sponsors across Canada and abroad. It also runs the Rainbow Award program to recognize exceptional supporters, reinforcing a culture of engagement around TSC awareness and philanthropy.
Supported audiences and overall impact
While CRF does not accept grant applications in the traditional sense, it functions as a focused philanthropic funder for the SickKids TSC Clinic. Through its annual contributions, the foundation indirectly supports children with TSC and their families across Ontario and beyond, improving access to coordinated care, facilitating research and helping build a stronger network around this rare disease.