A parent-led nonprofit on an urgent mission
Time is running out. Traditional research moves too slowly – but together, we can change that. This fundraiser gives children a real chance to be cured from FA. Every donation goes directly to the life-saving gene therapy research they so urgently need.
A race against timeto find a cure
Two years ago, our sons Tom (8) and Lev (5) were diagnosed with Friedreich’s Ataxia (FA). A rare, and for now, incurable disease that slowly steals balance, mobility, speech, and eventually their heartbeat.
When we received the diagnosis, our world shattered. But in our darkest moment, we found the determination to fight. Since then, we have dedicated our lives to this mission, traveling the world to meet scientists, doctors, and other families. We won’t stop until there’s a treatment. And we’re racing against time to make it happen.
A race against timeto find a cure
Two years ago, our sons Tom (8) and Lev (5) were diagnosed with Friedreich’s Ataxia (FA). A rare, and for now, incurable disease that slowly steals balance, mobility, speech, and eventually their heartbeat.
When we received the diagnosis, our world shattered. But in our darkest moment, we found the determination to fight. Since then, we have dedicated our lives to this mission, traveling the world to meet scientists, doctors, and other families. We won’t stop until there’s a treatment. And we’re racing against time to make it happen.
What is Friedreich’s ataxia (FA)?
Friedreich’s ataxia (FA) is a rare, progressive neurodegenerative disease that affects the nervous system and the heart. It is caused by mutations in the FXN gene, leading to reduced levels of frataxin – a protein essential for cellular energy production.
Groundbreaking gene therapy to save lives
There is currently no cure for Friedreich’s Ataxia. But there is hope. Gene therapy, already transforming other rare diseases, can deliver a healthy FXN gene to affected cells, slowing or even reversing FA. With your help, we can bring this breakthrough to patients in record time.
The scientist team: Global leaders in FA research
Our groundbreaking gene-therapy program is led by renowned scientists at UT Southwestern Medical Center, internationally recognized for genetic research and clinical innovation. Their expertise and dedication are bringing a cure for Friedreich’s Ataxia closer every day.
What is Friedreich’s ataxia (FA)?
Friedreich’s ataxia (FA) is a rare, progressive neurodegenerative disease that affects the nervous system and the heart. It is caused by mutations in the FXN gene, leading to reduced levels of frataxin – a protein essential for cellular energy production.
Groundbreaking gene therapy to save lives
There is currently no cure for Friedreich’s Ataxia. But there is hope. Gene therapy, already transforming other rare diseases, can deliver a healthy FXN gene to affected cells, slowing or even reversing FA. With your help, we can bring this breakthrough to patients in record time.
The scientist team: Global leaders in FA research
Our groundbreaking gene-therapy program is led by renowned scientists at UT Southwestern Medical Center, internationally recognized for genetic research and clinical innovation. Their expertise and dedication are bringing a cure for Friedreich’s Ataxia closer every day.
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Join the fight for a cure
Every donation brings us closer to a future without Friedreich’s Ataxia. Your support funds cutting-edge gene-therapy research and gives children like Tom and Lev the chance to walk, grow, and live full lives.
Join the fight for a cure
Every donation brings us closer to a future without Friedreich’s Ataxia. Your support funds cutting-edge gene-therapy research and gives children like Tom and Lev the chance to walk, grow, and live full lives.