LETS CURE LUCAS
Lucas is a joyful little boy living with an ultra-rare genetic condition linked to the RBM28 gene — with only two known cases in the world. There is no treatment, no roadmap, and no research currently in place. We are changing that.
FIGHTING FOR A CURE • EVERY DONATION COUNTS • HELPING LUCAS HEAL • BUILDING A BRIGHTER FUTURE
THERE IS NO TREATMENT • WE ARE BUILDING ONE
MEET LUCAS
Lucas is a happy boy just like any other child. The difference is he is losing his ability to walk and his independence.
Although you would never know from just looking at him - he is the happiest boy you will ever meet.
Lucas works incredibly hard to do things other children do naturally. Walking is what brings Lucas the most joy.
But his condition is progressive and time maters.
While other children his age are playing with their peers in daycare and pre-school, Lucas is in therapy for multiple hours a day - with a big smile on his face. DETERMINED
THE REALITY
No treatment exists
No research exists
No roadmap exists
He is losing skill
Life expectancy is unknown
This is the reality of many "Ultra-Rare" diseases
WHAT WE'RE DOING
We are not waiting.
We are actively funding and coordinating the development of a gene therapy for RBM28.
This includes:
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Early-stage research and disease modeling
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Vector development (AAV-based gene therapy)
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Pre-clinical testing and regulatory preparatio
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International collaboration
Gene therapy is currently the only approach that can address the root cause of Lucas' condition.
WHERE DO FUNDS GO
Funds raised are used to advance a coordinated research and therapy development strategy, including:
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Gene therapy development (AAV design, vector optimization)
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Disease biology research (understanding how RBM28 impacts cells and function)
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Patient-derived cell studies (including international research collaborations)
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Drug screening and repurposing efforts using Lucas’ cells
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Pre-clinical studies and validation
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Regulatory preparation and pathway development
This work is being carried out across multiple institutions to ensure we are not only building a therapy, but also understanding the disease well enough to do it correctly.
This is not for day-to-day care.
This is to build a treatment where none exists.
WHY THIS MATTERS BEYOND LUCAS
This is bigger then Lucas. This work will create a path for future children who would, like Lucas and our family, otherwise be told there is no hope.
You can help bring this to life.
You can help build this treatment.
Donate. Share Lucas’ story. Get involved.
WHERE WE ARE NOW!
$624,000+ raised
Initial research underway
Next phase: $500K USD
Upcoming Fundraisers & Community Events
Join us in supporting Lucas's journey.
See our upcoming fundraising events bringing us closer to a cure.
This is not funding care. This is funding the development of a treatment.
Major Event Donations
We are immensely grateful for the significant support received from the Spark Charity and PHBA Tournament events. These generous donations directly fund Lucas's critical treatments, bringing us closer to a cure and offering a lifeline for his future.
Latest Updates & News
Stay informed with the latest developments in Lucas's journey and our community's support.