Home / Health / Family's $350K Race for Rare Gene Cure
Family's $350K Race for Rare Gene Cure
24 Oct
Summary
- Over 100 runners participated in an 80km race for a young boy.
- The event raised approximately $350,000, surpassing its $250,000 goal.
- Funds will support research for a targeted gene therapy for a rare disorder.
An 80km race from Bondi to Manly saw over 100 participants rally in support of a family's ambitious fundraising goal. The event, organized by Scott Tindal and Melissa, co-founders of the charity Cure SCN2A, aimed to raise funds for research into SCN2A, a rare neurological disorder affecting their young son, Jack.
The Bondi to Manly Ultra successfully drew 105 runners who joined the cause, significantly exceeding its initial fundraising target of $250,000. By the event's conclusion, approximately $350,000 had been raised, a figure that delighted Mr. Tindal and underscored community support.
These funds are crucial for the family's broader mission to develop a $1 million targeted gene therapy for Jack. The SCN2A gene's disruption causes severe neurological issues, and with limited pharmaceutical investment for rare conditions, the family is creating a treatment pathway specific to Jack's genetic profile.
Melissa Tindal highlighted the emotional impact of Scott completing the race and the community's achievement. The successful fundraising marks a significant step towards funding phase two research, bringing the family closer to a potential treatment that could allow Jack to speak and communicate.
