Parents FA Gene Therapy Program - In Record Time

Phase 3 – Deadline: December 31, 2025

Milestone: Raise SEK 4 million

Help Us Save This Generation – A Father’s/ Mother’s Mission to treat Friedreich’s Ataxia - in record time

Hi, our names are Zardasht and Helena, we have two amazing young boys, Tom 8, and Lev 5. Both have been diagnosed with Friedreich’s Ataxia (FA) — a rare, devastating, and progressive genetic disease that slowly robs children of their ability to walk, speak, and eventually… live.

Like any parent, our greatest dream is to see our children grow up healthy and happy. But FA is not waiting — and neither can we.

For the past two years, we’ve done nothing else but fight for a solution. We’ve spent every waking moment trying to find a way forward — meeting with scientists, doctors, and other families around the world. We’ve traveled across countries to meet the right people. And we are incredibly grateful that some of the very best in the world chose to join our fight.

We’re now building a gene therapy program together with team:
Dr. Steven Gray and Dr. Ryan Butler — pioneers in gene therapy, with eight rare diseases already taken to clinical trials through their work at UT Southwestern Medical Center (UTSW)
And Dr. Marek and Dr. Jill Napierala — leading experts in FA who have dedicated their careers to understanding this disease.

CureFAchildren is a non-profit organization – We are parents working around the clock, driven by urgency, love, and hope.

Every single penny donated goes directly to the program. No salaries. No overhead. No admin fees. Just one goal: to find the best treatment for Friedreich’s Ataxia and save this generation in record time. That’s how it should be — but sadly, that’s not how the world usually works. We’re trying to change that.

You can follow the entire project — openly and in real time — on our website: www.curefachildren.com

This is more than a medical mission — it’s a human one. Because a rare disease could affect any of us. As the old saying goes:

Hodie mihi, cras tibi — Today me, tomorrow you.

So we are asking from the bottom of our heart: Help us fundraising. Please share to others. Every contribution brings us closer. Every voice helps us reach more families. Every donation is important.

I promise you this:

I will never stop fighting.

Not for my boys.

Not for your children.

Not for anyone still waiting.

Let’s save this generation — together.

We aim to raise $4 million in 2 years.

But we need $900 000 to get us to POC.

THESE ARE OUR TIMELINES:

Phase 2 – Deadline: June 30, 2025

Milestone: Raise SEK 2.5 million (Achieved)

Phase 3 – Deadline: December 31, 2025

Milestone: Raise SEK 4 million

Phase 4 – Deadline: May 30, 2026

Milestone: Raise SEK 2 million

We need your help to contribute what you can, and to help share #cureFAchildren so it can go viral, and our goal can be reached.

Tom & Lev and others can have a Future thanks to you.

HOW YOU CAN HELP TODAY

1. Donate what you can, any amount matters

2. Share on all social media with hashtag #cureFAchildren

3. Email this GoFundMe link and these steps to all contacts you know

4. Please email us personally with any tips on what else we can do, people to contact

WHERE IS YOUR MONEY GOING?

Every penny will go to the recearch being done right now on FA at UTSW. We are currently racing against time to fund this gene therapy program, for all FA children.

WHY SO MUCH MONEY?

Getting a clinical trial up and running can cost millions of dollars.

Our Goal is to reach FDA/ EMA approval.

TIME IS CRITICAL

Tom is 8 years old. The disease has already begun stealing his childhood — he has developed hypertrophic cardiomyopathy and struggles with balance. The ataxia has started. Lev is 5. He hasn’t shown major symptoms yet, but we know what’s coming.

They are not alone. Many other children show even more severe symptoms at an early age.
We don’t have time to wait. We’re fighting for a treatment — now, for all of them.

A CLEAR ACCELERATED ROUTE TO TREATMENT EXISTS

1. Establish proof of concept (Currently in progress, but we need support to advance the program)

2. Manufacture clinical-grade drug

3. Conduct final safety studies

4. Obtain FDA approval to initiate clinical trials

5. Commence clinical trials

6. Ensure the treatment reaches all patients worldwide living with FA

Websites & Social Media

cureFAchildren

FACEBOOK

INSTAGRAM

X

TIK TOK

With all our gratitude,


Zardasht, Helena, Tom & Lev

Note for international donors: Our fundraiser is currently set in Swedish Krona (SEK). If you’re donating from outside Sweden, here are some approximate conversions to USD:

 • 100 SEK ≈ 10 USD 

 • 200 SEK ≈ 20 USD

 • 1,000 SEK ≈ 100 USD

 • 10,000 SEK ≈ 1,000 USD 

 Thank you for your support — every contribution makes a difference! 

Let’s save this generation — together.