Team PKAN Loving Loic Foundation

💙 About Loving Loic Foundation

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)—an ultra-rare and devastating genetic disorder affecting as few as 1 in 1,000,000 people. PKAN is a progressive neurodegenerative disease that damages the brain over time, causing severe dystonia, loss of mobility, difficulty swallowing, and ultimately taking the lives of many of the children it affects.

PKAN is a highly prevalent form of Neurodegeneration with Brain Iron Accumulation (NBIA), a group of rare, genetic neurological disorders characterized by abnormal iron buildup in the brain that leads to progressive movement impairment and neurological decline.

What began as one family’s determination to save their child has grown into a global effort uniting PKAN families, scientists, clinicians, and supporters around one urgent mission: to accelerate the development of the first gene therapy for PKAN.

In just two years, the Loving Loic Foundation has raised more than $2.5 million to advance groundbreaking PKAN gene therapy research. These funds directly support work led by scientists at Oregon Health & Science University and the Horae Gene Therapy Center, building on more than two decades of scientific discovery and bringing this therapy closer to human clinical trials.

Today, the Foundation is focused on a critical goal: moving this promising treatment from the laboratory into Phase I/II clinical trials for children living with PKAN.

As part of the Million Dollar Bike Ride, the Loving Loic Foundation is proud to ride as the PKAN team supporting the NBIA Disorders Association, the global organization dedicated to advancing research and support for all NBIA disorders.

To achieve this, the Loving Loic Foundation is working to:

·       Raise the remaining funding needed to complete pre-clinical development and launch clinical trials

·       Strengthen partnerships between families, researchers, clinicians, and donors to accelerate progress

·       Increase awareness of PKAN and rare diseases to drive advocacy, collaboration, and support

Every dollar raised through events like the Million Dollar Bike Ride helps bring this life-saving therapy closer to reality.

At the Loving Loic Foundation, we believe no child’s life is too rare to matter.

Together, we are turning heartbreak into hope—and hope into action—for Loic and for children around the world living with PKAN.