Fort Worth Family Raises Millions for Rare Disease
The Flynt family has secured $1.1 million to fund research for a rare genetic condition affecting their son.
Updated on Oct. 24, 2026 in Philanthropy
A Fort Worth family is funding medical research for a rare mutation of the MTRFR gene after their 13-year-old son, Jaxson Flynt, was diagnosed with Leigh syndrome. The family has successfully raised $1.1 million to date to support the development of a potential gene therapy.
Why it matters
The funds provide critical support for medical research into a rare condition that affects fewer than 50 known people worldwide. This private initiative aims to advance a rat model study to reach the goal of gene therapy approval.
The family has raised $1.1 million in total funds, with a recent event contributing $250,000 toward a $2.2 million goal for gene therapy approval. Only 50 people are currently known to have the specific MTRFR gene mutation.
The players
Jaxson Flynt
He is a 13-year-old athlete who is living with a rare MTRFR gene mutation.
Jaxson's Crusaders
This organization leads the fundraising efforts to support research into Leigh syndrome.
UT Southwestern
This academic medical center is slated to begin research on a rat model for the gene mutation.
The details
Jaxson's Crusaders, a group founded by the Flynt family, has hosted annual clay shoot events at Defender Outdoors in Fort Worth since 2020 to fuel this research. Despite his diagnosis, Jaxson Flynt remains active in baseball, track, bowling, and weekly aquatic therapy.
Timeline
Annual clay shoot fundraising events began in June 2020.
The Oct. 17, 2026, Shotguns & Guitars event raised over $250,000.
UT Southwestern expects to conduct the rat model study in 2027.
Market Landscape
This effort reflects a growing trend of private families funding specific, small-population medical research when traditional pharmaceutical interest is limited. The project aligns with the UT Southwestern rat model research program to bridge the gap between discovery and therapy.
Residents of Fort Worth can contribute to the ongoing research efforts by participating in future fundraising events hosted by the family. These donations directly impact the timeline for the upcoming gene therapy studies scheduled for 2027.
The takeaway
Private fundraising is becoming an essential lifeline for families seeking treatments for ultra-rare conditions. These community-led initiatives turn grassroots support into the specific capital required for specialized medical development.
Further reading
Learn more about local efforts at Philanthropy.
Source note: This article includes information reported by Fort Worth Star-Telegram.
