This year we are following Alex's personal journey as a Batten disease sibling. Alex is 17 years of age, he has an older brother Ben and his younger sister Emily was diagnosed with CLN3 Juvenile Batten disease 2017. At age 9, this devastating news, was a huge reality to come to terms with, however Alex, like his older brother, has shown great resilience. As they’ve adjusted to their family’s journey—supporting Emily and holding hope for treatments or a cure—the brothers have embraced meaningful ways to contribute as siblings. In an effort to raise awareness, Alex and Ben entered a Young Carers competition, submitting a video describing their role in their sister’s life and winning a prize. You can watch their video here.     Alex continues to support his sister in many ways. Emily just thrives with Alex baking in the kitchen with her and she calls him “my Captain” when he helps her at soccer on the weekends. Alex is passionate about supporting others, completing his training as a swimming instructor for disabled children. Among Alex's many interests he is a very keen runner, in addition to school athletics, cross country carnivals and junior championships, this will be his 3rd time running City2Surf and to add to his personal challenge this year he is registered for the red start group (under 70 minutes) and is aiming for a finish time of 55 minutes. We would love our community to get behind Alex and support him as he strives to fight for his sister and all our Batten Warriors. Please sponsor Alex through his sponsor page and share with your family and friends to help Alex surpass his fundraising goal!   If you want to run for Batten disease too, please register to your chosen event using our BDSRA Australia Grassrootz group page.