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
An update from Faith. 10 April 2025
🌟 What an incredible day we had at our first fundraising event this past Saturday afternoon! A heartfelt thank you to Soul Church for graciously hosting us, and to Rhonda for providing the wonderful card kits from Stampin' Up. A big shout-out to Leoni for organising everything with such care and attention to detail!
It was so uplifting to see friends, family, and new faces come together to support the cause and learn about Sialidosis and my personal story.
The day was filled with delicious food, creative card-making, and the joy of connecting with new friends. We were also lucky to have some amazing prizes donated by local businesses and talented artists.
Thank you all for being a part of this special day. Your support means the world to me! 💖✨
Together, we’re one step closer to finding a cure for Sialidosis.
Faith
Latest donations
Hi Evan, thanks mate for joining with us. We are seeing better days ahead and that we will treat Sialidosis for all patients now and in the future - Dan & Faith
Thank you for standing with us. Together we will see new possibilities become reality - Dan & Faith
Hi, we are extremely grateful for your support and generosity. We are starting to see this gene therapy become tangible. Thank you - Dan & Faith
Friend, thank you for your generosity and helping us reach our goal. Your donation will help us stand and walk into the future - Dan & Faith
Thank you for standing with us and being part of our journey. We really appreciate your support - Dan & Faith
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