In The News
KBZK Bozeman
A Bozeman family is facing heartbreak and devastation as their son continues to battle a rare genetic disease. But even so, they’re not losing faith.
“I spent the first few days crying and grieving that this is what’s going to happen to him," said Sherine Blackford. "Then I spent the next four days being angry at the world—now, I just want to find a solution."
Lead & Empower Her Podcast EP 800
Join Dr. Julie Ducharme on "She CEO Talks" for a profoundly impactful episode featuring Sherine Blackford. As a mother and successful attorney, Sherine shares the heart-wrenching journey of her son, Loic, who has been diagnosed with a rare neurological disorder called Pantothenate Kinase-Associated Neurodegeneration (PKAN). Through her story, listeners will learn about the challenges of navigating a rare disease diagnosis, the complexities of genetic testing, and the race against time to fund a potential life-saving gene therapy. In this episode, Sherine delves into the creation of the Loving Loic Foundation, established shortly after her son's diagnosis. She outlines the innovative gene therapy project underway in collaboration with leading researchers and institutions, aimed at developing a cure for PKAN. This conversation not only highlights the personal struggles and resilience of one family but also shines a light on the broader implications for rare disease research and the hope gene therapy presents. Listeners will be moved by the dedication of a mother fighting for her child's future and may be inspired to contribute to this cause in any way they can, whether through donations or by spreading awareness. This episode is a must-listen for anyone touched by rare diseases or interested in the power of medical research and community support.
An amazing $1.2 million dollar donation has made it possible for Pantothenate Kinase-Associated Neurodegeneration (PKAN) gene therapy to take a huge leap forward. A private PKAN family made this extraordinary gift ensuring the project's funding through Phase 3 toxicology studies, reaching a significant milestone for the research team and providing hope to the community
Loving Loic Foundation facilitated an introduction to Dr. Miguel SenaEsteves and Dr. Heather GrayEdwards at the Horae Gene Therapy Center at UMass Chan Medical School Sena-Esteves, an expert in developing adeno-associated virus (AAV)-based gene therapies, and Gray-Edwards, an expert in utilizing animal models to enhance understanding of disease progression, agreed to partner with Hayflick’s team.
