Every milestone matters for kids like Loie
If you ever need a reminder of who your hard work helps, let it be Loie.
Loie Hammond seemed like a typical toddler. She loved playing with dogs of all sizes, being outside, listening to books, making up names for her dolls, and chasing around her big brother Owen. But soon, certain behaviors began sparking questions about her development, and eventually her family was given a tragic answer.
Loie was two years old when she was diagnosed with metachromatic leukodystrophy (MLD), a rare and fatal genetic disease. Children with MLD typically exhibit normal development in their early years, but as the disease progresses, they lose the ability to walk, talk, and interact with the world around them. Like many rare diseases, treatment options were limited to symptomatic support, and most kids don’t survive their first decade. Loie didn’t live to her 4th birthday. But, thanks in part to the work done right here at inSeption, the outcome may be different for other families.
Finding purpose in the pain
Loie’s parents, Matt and Lauren, were determined to keep fighting on behalf of their daughter, and they worked closely with another MLD family to establish the Leukodystrophy Center of Excellence at the Children’s Hospital of Philadelphia in 2015—the first of its kind in the US and now the leading leukodystrophy center in the world.
inSeption Group became a part of Loie’s legacy through our work with Orchard Therapeutics. Over the course of 2+ years, the inSeption/Orchard team prepped the BLA submission for OLT-200, a gene therapy treatment for MLD. They dedicated their time, talents, and energy, tackling many challenges and complexities along the way. Matt Hammond was a consistent presence during the process, sharing Loie’s story, encouraging the team, and helping us all to remember that what we’re doing matters to other MLD families across the world.
On September 18, 2023, Orchard received the incredible news that the FDA accepted the BLA filing of OLT-200 under Priority Review. On March 18, 2024, LENMELDY™ (atidarsagene autotemcel) became the first FDA-approved gene therapy for early onset MLD. This milestone marked the culmination of countless hours of hard work and the countdown to hope for hundreds of families living with MLD.
Never forget the difference you make
Every day in every way, you are not just showing up for your colleagues, partners, or stakeholders.. You’re showing up for families like the Hammonds who are facing a devastating diagnosis and may be sitting down with their doctors at this very moment to hear their options. The inSeption team poured their hearts into the Orchard submission, and we know you all share that same level of passion for the sponsors you support. With each trial, program, and submission, we have the incredible privilege of bringing new solutions to their table.
Loie’s time came before a treatment did, but her light will live on in the future we’re building together.
Thank you for all you do and all you give. It matters.
