💙 About Our Organization

The Loving Loic Foundation was founded by Sherine and Mark Blackford in honor of their son, Loic, who was diagnosed with Pantothenate Kinase-Associated Neurodegeneration (PKAN)—a rare and fatal genetic disorder that affects as few as three in one million children. What began as one family’s fight has become a movement uniting PKAN families, researchers, clinicians, and supporters worldwide around one mission: to fund and accelerate the development of a gene therapy cure.

In just two years, the Foundation has raised over $2.5 million, directly supporting groundbreaking PKAN gene therapy research led by Oregon Health & Science University and the Horae Gene Therapy Center at UMass Chan Medical School. This work builds on two decades of scientific progress and is designed to move a promising gene therapy from laboratory studies into human clinical trials.

This Super Bowl, we’re channeling rivalry energy into something bigger than football.

Loic is in Boston right now receiving treatment at Boston Children’s. So we’re hosting a Patriots vs. Seahawks rivalry donation war—two teams, one mission: fund the work that could save kids with PKAN, including our gene therapy research efforts with OHSU and the Horae Gene Therapy Center at UMass Chan Medical School.

Our strategy is bold—because the timeline is urgent:

Secure the remaining funding needed to complete pre-clinical studies and initiate Phase I/II trials
Strengthen partnerships among families, scientists, and donors to accelerate development and regulatory readiness
Expand awareness of PKAN and rare diseases to drive advocacy and support

How it works: pick your team, donate, and share. The team that raises the most earns bragging rights—but the real winners are the kids and families who can’t wait.

Every effort is guided by the belief that no child’s life is too rare to matter. Together, we’re transforming heartbreak into hope—and hope into action—for children like Loic and for generations to come.

Super Bowl Give-Off: Patriots vs Seahawks to Cure PKAN

Two teams. One cause. One day.

Team Leaderboard

Team Members