For Families and Caregivers
A community that understands
LBSL is a big diagnosis. We’re here for you.
Recently Diagnosed?
Stunned by this diagnosis? Grieving the loss of the life you thought you had? Terrified about the future? We’ve been there. You’re not alone, and we’re here to walk alongside you and support you every step of this journey!
Cure LBSL offers a growing library of resources to help families navigate everyday life with LBSL. From school accommodation guides and IEP/504 planning tools to emergency medical protocols and wellness resources, we're here to help you advocate with confidence and stay organized.
Free LBSL Resources
School Resources
Students with LBSL may face challenges in school, but there are so many opportunities to help!
Medical Resources
Our medical resources include emergency protocols, hospital planning guides, genetic testing information, and tools you can share with healthcare providers to help them better understand LBSL.
Hope on the Horizon
LBSL was first identified in 2004, but research into the DARS2 gene, the genetic cause of LBSL, didn't begin to gain momentum until years later. Today, Cure LBSL proudly funds and supports groundbreaking LBSL research around the world.
Ways to Get Involved
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Join Our Facebook Group
Patients, caregivers and family members are invited to join our private LBSL Families group on Facebook. This is a safe, welcoming and supportive community to ask questions and be encouraged!
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Follow Us On Instagram
Stay connected with the latest Cure LBSL news, research updates, family stories, upcoming events, and ways to get involved. Follow us on Instagram to celebrate milestones, learn about new resources, and help raise awareness for LBSL throughout the year.
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Sign Up for Our Newsletter
Never miss an update from Cure LBSL! Subscribe to our email newsletter to receive the latest research news, community stories, family resources, upcoming events, and opportunities to make a difference all delivered right to your inbox.
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Celebrate LBSL Awareness Day
Sept. 20 is LBSL Awareness Day!
Join us on social media as we shine a light on research and share updates. Don’t forget to share photos of you in your Cure LBSL gear!
Meet Some of
Our Motivation
We’re on a mission to find a cure for LBSL, raise awareness, and support patients and families. These individuals are just part of our reason why!
