Our Story

Lilly and Blair were both born in 2018 and missed developmental milestones from the very beginning. Lifting their heads, sitting up, crawling and pulling up to stand proved to be difficult or impossible. After working with early intervention specialists and therapists, it became apparent that the girls weren’t going to “catch up” to their peers.
In August 2020 - in the middle of the pandemic and only months after welcoming our second children - our families each received the life-altering news about our little girls. With just 16 known cases, it was serendipitous to learn there was another family in our town who was embarking on the exact same journey. We have become fast friends as we share resources, knowledge and the ups and downs of navigating our new normal with de novo spastic paraplegia.
In the nearly three years since their diagnoses, we’ve participated in numerous studies, met with leading researchers and doctors, connected with other families, educated our communities, and continued to push for a treatment or cure. Stay tuned for next steps as we work to rewrite the future for these incredible children.

Meet Lilly and Blair

LILLY GREGG

Lilly is a determined, opinionated and kind little girl. She has never met someone or something she doesn't want to "help" and she loves dancing and singing, her stuffed animals, baking, and her brother, cousins and friends. At just 5 years old, she is mature beyond her years and endures interventions, medications and endless therapies with a resilience far beyond her age. 
Lilly primarily crawls around the home, uses a walker at school and relies on her wheelchair more and more for longer distances. She navigates life with a smile on her face and an endless curiosity about the world around her, even when she has to rely on someone else to help her experience the life most of us live without second thought. 
We are so thankful for the people in her life that continually cheer her on and accommodate her needs. While the future is uncertain, our hope and belief in science is not, and we hope you will join our fight. 

BLAIR LOREK

Blair (often referred to as “Blair Bear”) lights up every room she enters and can change the course of any bad day with her brilliant smile. Blair loves to explore nature and nothing makes her happier than when someone can assist her in collecting leaves or rocks outside, or even simply playing in the mulch. She is an extremely affectionate child who is obsessed with stuffed animals, particularly her lifelong best friend “panda bear”. Blair is extremely empathetic and a relentless hard worker, serving as a role model to all she encounters who can clearly see the challenges she herself faces in daily life. Even at 6 years old, and despite hours of therapy each day and weeks of intensive therapy each year, Blair has never been able to walk independently without support and her wheelchair providers her main source of mobility. More than anything, Blair would be delighted to someday be able to collect her precious rocks and leaves on her own, without relying on a caretaker to do it for her.

Medical Advisory Board

  • Darius Ebrahimi-Fakhari, MD, PhD

    DIRECTOR, MOVEMENT DISORDERS PROGRAM, BOSTON CHILDREN’S HOSPITAL

    Dr. Ebrahimi-Fakhari is a child neurologist and neuroscientist with special expertise in childhood-onset neurogenetic, neurodegenerative, and movement disorders. His translational research includes The Registry and Natural History Study for Early-Onset Hereditary Spastic Paraplegia.




  • Ariane Soldatos, MD, MPH

    DIRECTOR, PEDIATRIC NEUROLOGY CONSULTATION SERVICE, NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE (NINDS) AND PHYSICIAN SCIENTISTS, UNDIAGNOSED DISEASES PROGRAM, NATIONAL HUMAN GENOME RESEARCH INSTITUTE (NHGRI), NATIONAL INSTITUTES OF HEALTH (NIH)

    Dr. Soldatos' research interests include genomics and clinical trials for rare diseases. She is associate investigator on first-in-human clinical trials including gene therapy for rare childhood neurodegenerative diseases.

  • Matthew Elrick, MD, PhD

    ASSISTANT PROFESSOR OF NEUROLOGY, THE JOHNS HOPKINS HOSPITAL.

    Dr. Elrick specializes in the care of children with neuromuscular disorders, and EMG studies in children and adults. He has special interests in genetic neuromuscular and neurodegenerative disorders and Acute Flaccid Myelitis.







Scott Chilson

Jay Coonan

Board of Directors

Katie Gregg

Chris Lorek

Stephanie Lorek

Michael Gregg

SPG4 Alliance Partners

Together We Can

Time is not on our side, but we hope you will be.