In our blog in August we shared that there was a treatment available developed by Nlorem, and the first child was to be treated. Connor has now had three doses and doing well. Join us in supporting the family and helping with their costs as they pave the way for potential new treatment for others waiting.

Connor needs some help

Ben Rosenberg, a vibrant 28-year-old with an unbreakable spirit, was diagnosed in the summer of 2024 with TUBB4a-related Leukodystrophy after a lifetime of uncertainty. This rare neurological condition affects his movement, speech, and balance, but Ben embraces life with a philosophy that inspires everyone around him: "Stay joyful and do the best you can with what you got."

LINK TO BEN’S STORY