A Single Injection to Save a Life - Updates

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

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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

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Friends & Strangers Unite!

3 April 2025

Hi Everyone,

It’s hard to believe it’s already been just over a week since our last update—and what an incredible week it’s been. We were honored to be featured on TV1 News (https://www.1news.co.nz/2025/03/26/kiwi-siblings-battling-rare-genetic-condition/), and in the days since, we’ve witnessed an outpouring of support from all walks of life. People from both our past and present have reached out, eager to reconnect and offer their help in any way they can.

What has truly taken us by surprise, though, is the extraordinary generosity of strangers—individuals who have dedicated their time and energy to helping us organise media coverage, events, raffles, and auctions. We are deeply touched by this kindness, and it serves as a powerful reminder of how many people care, even if they don’t know us personally.

The road ahead may be daunting, and the goal we’re working toward is significant. But with all of you by our side, we know we’ll get there. We are deeply grateful, and we couldn’t do this without you.

Thank you. You’re not just supporting us; you’re making a real difference to an entire community.

With sincere appreciation,

Dan & Faith

P.S. We have a number of events coming up if you want to have a good time for a great cause. If you're in the Waikato region on Saturday come and join Faith for the afternoon making artisan cards for Mother's Day https://www.eventfinda.co.nz/2025/fundraiser-card-making-with-faith-peach/matamata

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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.