Fundraising

In today's landscape, research and treatment breakthroughs for rare disorders like SPG47 are directly linked to the generosity of supporters like you. Remember, just a few years ago, SPG47 was a mystery. But now, because of the tireless dedication of families like the Duffys and the Edwards, as well as brilliant scientists and researchers, there's a beacon of hope. We stand on the precipice of groundbreaking treatments, and your contributions can turn potential into reality.

Excitingly, through donations, funds, and grants, a gene therapy for SPG47 is nearing its completion! Imagine, by next year, a child could be receiving a life-changing dose. As gene therapy development races towards this finish line, parallel avenues of drug development are making incredible strides. The dream? Multiple therapeutic options on the horizon. But to realize this, we need your support.

Your donations can accelerate the pace of research, ensuring timely drug and gene therapy developments. For Dominik, every dollar raised brings him closer to accessing these groundbreaking treatments, offering a brighter future.

We're fortunate to have insurance covering many treatment costs. Yet, crucial intensive therapies that help enormously and specialized equipment remain are not covered. Gene therapy in particular is extremely expensive. Every contribution, no matter its size, can have an immense impact on Dominik's journey and make it more likely that we can afford gene therapy.