we do hard things.
​Jack’s Pack is a nonprofit born from the heart of a little boy with extraordinary courage. Our mission is to raise awareness, support affected families, and fund critical research for CLN1 Batten Disease—a rare, degenerative condition that has already taken Jack’s vision and threatens so much more. We believe in acting with urgency, loving without limits, and doing hard things—together.
meet jack
Jack is 9 years old, curious, funny, and fiercely brave. He’s losing his vision due to CLN1 Batten Disease—a rare and fatal genetic disorder that affects the nervous system. It’s progressive and devastating, but Jack’s spirit is anything but.
This page is for those who want to know why we fight. Jack’s Pack was created to honor him—and to stand up for every child like him, who deserves a future full of light.
we will be courageous and kind.
We’re here for the kids like Jack.
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Jack’s Pack is dedicated to:
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Raising funds for life-saving research, including enzyme replacement therapy
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Supporting families navigating the heartbreak of Batten Disease
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Increasing awareness about this rare condition
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Building a community that leads with courage and kindness
We are a team of doers, dreamers, and fighters—and we do hard things because the kids we love need us to.
heart of the pack award
Some hearts are just built differently. The Heart of the Pack Award honors individuals who embody the courage, compassion, and selfless spirit that define our mission. These are the people who lift others, who lead with love, and who remind us what strength really looks like.
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Learn more about our honorees and nominations.
join the pack
Jack’s Pack was born from the heart of a boy who meets every obstacle with quiet courage and boundless love.
Though Batten Disease is stealing Jack’s vision and abilities, it will never touch his spirit—and it’s that spirit that drives our mission forward.
When you give to Jack’s Pack, you’re fueling advocacy, research, and awareness for all families affected by CLN1 Batten Disease. Your support helps us fight for treatment options, push for funding, and build a future where no family hears, “There’s nothing we can do.” Join us.
Be part of the pack. Carry Jack’s light into the world.