June 9, 2024

Together, We Are Batten Advocates for a Cure. 

Please help us spread awareness and fundraise for all types of Batten Disease this June 9th! 

Join us on June 9th for a 5k! You can participate in spirit, with us at Blackburn Park (more details to come), or at your favorite place to take a hike/walk/run/paddle. 

Izzy’s Story

Izabella is an empathetic, curious, and energetic big sister. She is a bookworm and will spend hours reading books. She loves singing and dancing. Flowers make her happy. She embodies kindness and compassion. When she is excited you can feel it bubbling out of her. Her smile brightens up a room, she is a beam of light. She is joy.

She is also rare, extraordinary, unique - all the way down to her DNA.

On 12/20/21, Izabella was diagnosed with a rare genetic disorder, Battens Disease CLN7. This disease is neurodegenerative, rapidly progressive, and terminal. Historically, this disease has been untreatable, unstoppable. The prognosis for CLN7 is late childhood, 9-11 years. However, thanks to some other incredible CLN7 families, alongside our devastating diagnosis came a measure of hope.

In March of 2022, Izabella became the 4th child in the world (1st from the US) to receive a phase 1 clinical trial treatment of gene therapy for CLN7. Since the treatment was a first in human trial, we will not know exactly how it will alter the course of Izabella’s disease. We are hopeful that because of her, future kiddos with CLN7 will have a fighting chance. 

We are grateful for all the time with her that is given to us.