11/09/2026
💛 SPG47 - ZAJEDNO DO CILJA! 💛
Imamo važne novosti! 🙏🏼
Od prosinca 2025. godine obitelji djece oboljele od nasljedne spasticne paraplegije tip 47 (SPG47) prikupile su 1.536.399 $ od potrebnih 5 milijuna $ za pokretanje kliničkog ispitivanja genske terapije. 🥹💛
🎯 Više od 30 % cilja je ostvareno!
Ali još nam nedostaje 3.463.601 $.
Istovremeno se aktivno rade prijave za bespovratna sredstva koja bi mogla značajno pomoći u financiranju terapije. No ne možemo čekati, moramo nastaviti prikupljati sredstva.
Ovih 5 milijuna nije samo novac.
To je nada.
To je prilika za više više samostalnosti, više mogućnosti i lakšu budućnost za našu djecu. 💛
🙏🏼 Svaka donacija, svaka podjela, Svaka osoba koja proširi ovu priču može napraviti razliku.
🍀 Ne odustajemo. Zajedno se borimo za budućnost naše djece.
👉 Pomozimo SPG47 djeci doći korak bliže genskoj terapiji.
Donirajte i podijelite ovu objavu. 🙏🏼💛
🍀 Donacije su moguće direktno na organizaciju Cure AP-4, koja prikuplja sredstva za nastavak kliničkog ispitivanja genske terapije za SPG47;
1. PayPal: https://www.paypal.com/donate?campaign_id=R5WUL9WXU6JPE
2. Stripe (Google Pay i/ili Apple Pay):
https://donate.stripe.com/cNi14oeor8AZbnaeSJ1Fe08
Cure AP-4
💛 SPG47 CLINICAL TRIAL UPDATE 💛
We wanted to take a moment to share where we are— and, more importantly, where we’re going.
Since December 2025, the SPG47 families have come together and raised $1,536,399 toward the $5 million needed to begin the gene therapy clinical trial. That means we are already more than 30% of the way there. 👏🏼
And there is a LOT happening behind the scenes.
✨ Grant applications are actively in the works. These opportunities could make a tremendous difference in helping fund the remainder of the trial. Grant applications are a substantial undertaking and require an incredible amount of time and work from our principal investigators, who are working hard to move these opportunities forward.
But we cannot wait on grants alone. We need to continue raising as much as we possibly can while these opportunities are being pursued.
Why does this matter so much?
Because this isn’t simply a fundraising goal. This $5 million represents the opportunity to get a gene therapy clinical trial started for children living with SPG47. This is hope for more time. More milestones, independence, and possibilities.
It is the possibility that our children could have access to something that may change the course of this disease— not someday, but through a trial we are actively working to make happen NOW!
We have already come so far, but $1.5 million is not the finish line.
We still have $3,463,601 to go.
Every donation matters. Every share matters. Every conversation matters. Every person who helps us get this message in front of someone who can help matters.
💛 We are not giving up. We are working together to give these children a chance at a different future.
Thank you to every person who has donated, shared, prayed, advocated, hosted an event, or simply told someone about SPG47.
Help us move that thermometer ⬆️ Donate to help Cure SPG47 on our website!
