💙 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 $2.4 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 aims to move a promising gene therapy from laboratory studies into human clinical trials.

The Loving Loic Foundation’s strategy is bold yet urgent:

Secure the remaining $5 million in 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 public awareness of PKAN and rare diseases to drive advocacy and support.

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.

Giving Tuesday for Loving Loic: Fuel the Cure for PKAN

By Loving Loic Foundation

Giving Tuesday for Loving Loic: Fuel the Cure for PKAN

One day. One community. One goal: fully fund gene therapy research to stop PKAN.