Being deeply loved by someone gives you strength. – Loving someone deeply gives you courage.
Attr. Lao Tzu, Chinese Philosopher
Jonathan Hyer
Co-Founder, Trustee,& Father
Our Story
When my son, Charlie, was diagnosed with SAVI in April 2023, we experienced a torrent of emotions. The most dramatic and persistent of those was a complete absence of hope as our life filled with uncertainty.
As a clinician, I spent untold hours trawling through published research as I tried to work out how best to help my son. Yet, it was obvious there were huge holes in our understanding of the condition and barely any effective treatments.
Incredibly, the technology already exists to cure SAVI. It’s the perfect target disease for gene therapy.
Our reason
My motivation for starting FORGE was perhaps the simplest question of all, ‘How can you live, day-to-day, with this uncertainty?’.
Hope on its own is not enough. Hope needs a plan
The beginning
Starting something special
SAVI syndrome is a very recently recognised condition and was first reported in 2014. This means there’s no long-term outcome data.
Although SAVI and similar monogenic disorders are rare, investing in research will shed light on a whole range of other more common conditions such as severe Covid-19 infection, rheumatoid arthritis, systemic lupus erythematosus and other autoimmune conditions.
I founded FORGE – the Foundation to Overcome Rare Genetic Errors – together with my brother Justin and our father, Stephen. We are here to give renewed hope to those affected and their families. We do this by raising funds for research, by raising awareness, and by supporting patients and their families.Although we are currently focusing on SAVI, we hope to translate our journey to transform the lives of individuals with other rare autoimmune genetic diseases.
We have set up FORGE to
Share information
with those affected by this condition through centralised information, peer support and practical services.
Raise awareness
of the condition and share news of any research breakthroughs.
Raise funds
for scientists and to commission medical research to get closer to a cure.
The beginning
Hope has no borders
We believe we can connect every single SAVI patient and share clinical experience across the World. This will allow all patients to benefit from unpublished research data or current clinical trials.
We want those with SAVI and their families to have a voice and actively contribute to the
search for new and effective treatments that are relevant and important to them.
SAVI is ultra rare and manifests in many, many ways. This means the best care for patients is often highly fragmented and experimental due to a lack of experience and evidence. We hope to connect the centres of excellence around the world with local treating immunologists, rheumatologists, and respiratory physicians, as well as patients and
caregivers.
The beginning
Becoming a registered charity
FORGE has had an international outlook from the start. FORGE Australia links Australian researchers with local patient groups. We work in partnership with charitable organisations and patient groups across the world that share our aims.
FORGE was registered with the Charity Commission in the UK in December 2023. We registered our second charity – FORGE Australia – in Autumn 2025.
We welcome any connections to international bodies interested in our aims.
Where we need you
Every donation helps us create a future where rare genetic disorders are understood and fully treatable.
Every gift of time supports us along our pathway to a cure.
