Our Story
July 2021 - Received diagnoses
August 2021 - Provided blood and DNA samples for NIH study
December 2021 - Enrolled in Natural History Study at Boston Children’s Hospital
April 2022 - Participated in the Inaugural Scientific Symposium on De Novo SPG4 (view the parent perspectives from Chris and Katie)
January 2023 - Formed The Lilly and Blair Foundation
March 2023 - Featured in The Washington Post
June 2023 - Hosted our first annual Golf Tournament and Dinner (view photos and remarks) and led the Childhood-Onset session at the SPF conference
September 2023 - Received 501(c)(3) status
December 2024 - Partnered with NIH to host the Second Scientific Symposium on De Novo SPG4
February 2024 - Interviewed by The Washington Post Live alongside experts from the FDA and Cure Rare Disease.
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
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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.
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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
Together We Can
Time is not on our side, but we hope you will be.