A Single Injection to Save a Life
A new gene therapy offers Faith and Daniel, who have Sialidosis, hope for life by correcting the gene with a single injection.
Nationwide
www.youtube.com/embed/VtY3bymH7XA (Faith's story)
Faith is a dedicated Early Childhood teacher, loving wife, and new mother. Her life is overshadowed by a rare and devastating disease that claimed her brother, Antonn, and now threatens both her and her other brother, Daniel.
Antonn passed away at 42 from this disease. Once a strong builder, he lost the ability to walk, speak, and hold objects. Despite seeing top neurologists, his condition went undiagnosed. As a teen, Faith became his caregiver, watching him deteriorate before his passing.
Sialidosis is inherited, and now Faith and Daniel face the same fate.
Daniel, once a talented guitarist who opened for Van Halen at 16, has seen his passion fade due to Sialidosis. His wish is to continue doing everyday things like swimming with his children. When Daniel noticed symptoms similar to Antonn's, he and his wife moved to Australia for answers. After months of testing, Daniel was diagnosed with Sialidosis, a rare metabolic disorder caused by a defective gene (NEU1) leading to irreversible symptoms. Historically, there has been no official treatment for Sialidosis.
https://www.youtube.com/watch?v=viqq-l8KRVs (Supporting Dan - Metabolic Specialist Dr. d'Azzo)
But now, there is hope. A groundbreaking gene therapy from St. Jude Children’s Hospital and the University of Massachusetts can reverse the disease with a single injection.
Please donate today and help give Faith and Daniel life-saving therapy. Every contribution brings them closer.
Use of funds
This clinical trial comes at a steep cost. Their goal is to raise $1 million ($500,000 each) to cover the costs of the therapeutic gene production. All funds raised from this site will go to UMass Chan Medical School for Sialidosis gene therapy.
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Latest update
Together, we stand strong! 23 March 2025
Hi Everyone,
I just wanted to take a moment to share a quick update on what's been happening. First of all, WOW! The response has been nothing short of amazing. We’ve been truly overwhelmed by the outpouring of support and generosity we’ve received. Your kindness has been incredibly encouraging, and it’s giving us the strength and motivation to push even harder toward our goal.
Thanks to all of you, we've been able to get the word out, and we’ve appeared in places like the NZ Herald https://www.nzherald.co.nz/nz/sialidosis-therapy-kiwi-siblings-fundraise-for-injection-against-disease-that-killed-brother/XRBNLH6SMNDOJECLHMWHQWIX7E/ , stuff.co.nz, local newspapers, as well as on Facebook, LinkedIn, and more. It's been so uplifting to see people rallying behind the cause, embracing the spirit of "Kia Kaha!" – standing strong together, even when the odds feel overwhelming.
As we’ve now surpassed $31,000, please know that every dollar you’ve so graciously chosen to give will go directly toward gene therapy that will not only help us, but also future patients with Sialidosis. We are incredibly grateful for each and every one of you.
Together, we stand strong!
With heartfelt thanks,
Dan & Faith
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