Project
Poppy
Project Poppy exists to help accelerate hope for our children and every family facing Sanfilippo B alongside us — so more children have the chance to reach the future.
What is project poppy?
Both of our children have Sanfilippo Syndrome Type B, a devastating, rare, terminal disease.
Both of our children, Poppy (9) and Oliver (2) were diagnosed last summer. We immediately rallied with other families across the United States to help accelerate groundbreaking treatment efforts that could change the future of this community.
Now, we are working hard to keep our children healthy and stable while those treatment pathways continue moving forward.
For decades, families affected by Sanfilippo have watched promising research move forward one careful step at a time.
Project Poppy is different.
It represents a new way of thinking about how treatment development happens—not by lowering standards, but by finding opportunities to move life-changing work forward faster.
Through an unconventional pathway, Poppy is planned to become the first child treated in a promising new gene therapy program being developed in Paris.
By helping move the project forward sooner, the goal isn't simply to help one child.
It's to help accelerate the timeline for every child who may follow.
Project Poppy is about more than just one child.
It’s about moving hope forward faster.
If successful, this approach could help shorten the timeline by years—bringing treatment to children who do not have years to spare.
Poppy is 9. She is funny, creative, resilient, and deeply loved. She loves puzzles, books, dolls, and the Eiffel Tower.
She also has Sanfilippo Syndrome Type B.
Often described as childhood Alzheimer’s, children with Sanfilippo progressively lose speech, mobility, cognition, and independence.
Most children do not survive past the age of 15.
Meet Poppy
project poppy is funded.
But our children still need time.
While major treatment funding has been miraculously secured, the day-to-day fight to keep our children healthy and stable is still incredibly urgent.
Right now, support helps fund:
supportive therapies
travel for treatment
emerging care approaches
intensive interventions
laser therapy
MUSE stem cell treatment
These therapies are not part of the funded treatment project, but they may help buy precious time while treatment pathways continue moving forward.
We are not trying to raise millions.
We are trying to help our children reach the future.
The need is urgent — but achievable.
How You Can Help
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Support Poppy & Oliver
Help fund supportive therapies, treatment travel, and emerging care while we wait for treatment pathways to progress.
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Shop
Every purchase helps support our family while spreading awareness far beyond our own community.
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Follow the Journey
Real-time updates, advocacy, breakthroughs, setbacks, and everyday life with Sanfilippo Syndrome Type B.
Contact
Have questions? Know a family facing Sanfilippo?
Interested in sharing our story? Want to collaborate, interview us, or simply say hello?
We'd love to hear from you.
For media inquiries, speaking requests, podcast appearances, or partnerships:
megan@curepoppyandoliver.com