Skip to content

Meet our inspiration

This is Charlie. He is the inspiration behind FORGE. His journey began in April 2023 when a geneticist informed his dad, Jonathan, that Charlie had a rare mutation in the STING1 gene. This mutation triggers an overactive immune response, causing the condition we know as SAVI syndrome.

Charlie’s story is a powerful reminder of the urgent need to develop better treatments. Join us in our mission to make a difference to children like Charlie.

Meet our inspiration

This is Charlie. He is the inspiration behind FORGE. His journey began in April 2023 when a geneticist informed his dad, Jonathan, that Charlie had a rare mutation in the STING1 gene. This mutation triggers an overactive immune response, causing the condition we know as SAVI syndrome.

Charlie's story is a powerful reminder of the urgent need to develop better treatments. Join us in our mission to make a difference to children like Charlie.

About us
Impact
Guidance & Support
- Kids Corner
- Parents & Caregivers
Research
- Research Opportunities
- Apply for a grant
Latest
Contact

Instagram
linkedin
facebook
X

CHARLIE

Article type:
Story

Estimated read time:
1 min min read

Published:
11/06/2026

Share:

Copy link to clipboard
Share on Linkedin
Share on Linkedin
Share on X

(case study to add)

Help us along the pathway to a cure

Sign up for our newsletter

Who are you?

Parents & Caregivers
Donate
Volunteering
Fundraising

Who are FORGE?

About
What is SAVI?
Donate

Contact us

collaboration@weforgehope.org
+(44) 7838 136180
UK Charity number: 1206192
Aus Charity number: ABN 56685154750

Instagram
linkedin
facebook
X

Disclaimer policy
Privacy Policy
Cookie Policy

Foundation to Overcome Rare Genetic Errors, a charity registered in England and Wales charity number 1206192. Registered office: 5 Brayford Square, LONDON, E1 0SG. Foundation to Overcome Rare Genetic Errors, a charity registered in Australia ABN 56685154750. Registered office: 470 St Kilda Road. MELBOURNE

Join our newsletter

To keep up to date with our journey, sign up to hear the latest updates on our research, patient support, and the impact your support is making.

Your first name *

Your last name *

Your email address *

Which option best describes you?

I agree to receive email updates from FORGE.

Manage Consent

To provide the best experiences, we use technologies like cookies to store and/or access device information. Consenting to these technologies will allow us to process data such as browsing behaviour or unique IDs on this site. Not consenting or withdrawing consent, may adversely affect certain features and functions.

Functional Functional Always active

The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.

Preferences Preferences

The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.

Statistics Statistics

The technical storage or access that is used exclusively for statistical purposes. The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.

Marketing Marketing

The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.

Manage options
Manage services
Manage {vendor_count} vendors
Read more about these purposes

View preferences

{title}
{title}
{title}

Manage Consent

To provide the best experiences, we use technologies like cookies to store and/or access device information. Consenting to these technologies will allow us to process data such as browsing behaviour or unique IDs on this site. Not consenting or withdrawing consent, may adversely affect certain features and functions.

Functional Functional Always active

The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.

Preferences Preferences

The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.

Statistics Statistics

The technical storage or access that is used exclusively for statistical purposes. The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.

Marketing Marketing

The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.

Manage options
Manage services
Manage {vendor_count} vendors
Read more about these purposes

View preferences

{title}
{title}
{title}