About PKAN and the Blackford Family

Together, in the face of what might otherwise be seen and felt as purely sad or tragic, we have the opportunity to do something truly special. We can develop and help bring to market a gene therapy treatment to save young lives. Inspired by the children we’ll lose too soon and the parents who love them, we’re building an inspired community that includes PKAN families, leading academic researchers and healthcare partners, and generous donors. Our shared goal: to develop an effective gene therapy treatment that will save the lives of children born with pantothenate kinase-associated neurodegeneration (PKAN). This rare disorder impacts as many as three in one million children, and every one of those young lives matters to us. We carry out this innovative and challenging work under the leadership of the Loving Loic Foundation. Sherine and Mark Blackford created this not-for-profit organization in honor of their son, Loic Blackford, a PKAN warrior who just celebrated his third birthday. However, the Loving Loic Foundation has always been and will always be about all of families impacted by this genetic disorder, for which – today – there is no cure. The community we’ve built seeks a cure for the benefit of all PKAN warriors, now and into the future. Our Remarkable Team The Loving Loic Foundation is proud to be working in partnership with PKAN physicianscientists at Oregon Health & Science University (OHSU) and genetic-scientists from the Horae Gene Therapy Center at UMass Chan Medical School (UMass). These experts from OHSU and UMass bring complementary skill sets, decades of experience, and a collaborative approach to our partnership, positioning them to successfully develop a gene therapy treatment for PKAN. For more information on our foundation, please visit lovingloic.org.