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.
Other page links
Latest update
The mahi continues! 5 July 2025
What a way to begin our journey to Cure Sialidosis!
When we launched this campaign, we had no idea the wave of support two Kiwis could spark by simply sharing our story.
From national news to the front page of the NZ Herald, and across social media — family, friends, businesses, artists, and total strangers stood with us with the message “Kia Kaha!” So together, we stood strong.
Because of your support, families around the world with alerts for Sialidosis found us. Patients, researchers, and advocates began reaching out. We built connections, shared knowledge, and realised the work we're doing has power far beyond our own story — it’s lighting the way for others too.
As this Givealittle campaign comes to a close, a global movement led by Kiwis is just beginning. Your generosity gave us momentum. Your belief gave us strength. The mahi continues — and we’re not stopping.
Please keep sharing and following our journey as we push forward to Cure Sialidosis. Join us on Facebook: https://www.facebook.com/profile.php?id=61575575214955
Or join us on our global website: curesialidosis.org
With heartfelt thanks,
Dan & Faith
Latest donations
Thank you for your support. It really means a lot to us and moves us towards a cure - Dan & Faith
We'll definitely keep you updated on progress. We've been blown away by the support to date and know that good things are on their way - Dan & Faith
Hey Amie, this definitely will bring us a step closer to a cure. Thanks for your support! - Dan & Faith
Bless you bro. We're getting this done - Faith & Dan
Who's involved?
Page Q&A
Ask a question hereAny concerns?
Report this pageThank the donor
Your message will be displayed on the page and emailed to the donor.
Your new message will also be emailed to the donor.
Saving a blank entry will delete the current comment.