LBSL is a big diagnosis.
We’re here for you.
Stunned by this diagnosis? Struggling to wrap your mind around it? 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!
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We’re so glad you asked! Click HERE for a quick overview of the disease.
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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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We’d love to support you and your loved ones on this journey. Email us at info@curelbsl.org.
School Resources for LBSL Students
Cure LBSL created and curated resources to help children and teens with LBSL thrive at school. Share with teachers, administrators, school disability committees, and/or the health clinic to help school staff understand the unique needs of students with LBSL. Click any of the below resources to download and use them for free!
Thriving in School with LBSL
(Click to download)
Authors: Melody Kisor, MS & Molly O’Brien, MA
Audience: Resources for classroom teachers
School Needs & Accommodations for Students with LBSL
(Click to download)
Authors: Molly O’Brien, MA & Melody Kisor, MS
Audience: For special education and/or disability accommodation teams to create IEPs, 504s, or other accessibility plans
Beginning of the Year Email
(Click to download)
Author: Beth McGinn
Audience: Introductory letter to a new teacher (fillable template)
Community Meeting - Back to School with LBSL
Author: Melody Kisor, MS
Audience: LBSL community meeting where we spoke about ways to help people with LBSL (and related conditions) thrive in school! We covered daily needs, accommodations, emergency plans, and disability meetings.
How to Prepare for an IEP Meeting
Authors: Molly O’Brien, MA – Special Education Teacher
Audience: 2022 LBSL International Conference attendees
Information for School Nurses - Mitochondrial Disease
Author: Kennedy Krieger Institute: Specialized Health Needs Interagency Collaboration Project (SHNIC)
Audience: School nurses and health clinic teams
LBSL Medical Resources
LBSL Medical Protocols
We consulted experts to create custom emergency protocols for LBSL patients. Print these forms and have your doctor or healthcare provider fill out and sign. Keep this with you and share with emergency medical personnel or clinicians unfamiliar with you and/or LBSL. Your provider can visit this website for reference: https://www.curelbsl.org/professionals/#protocols
Mitochondrial Protocols
Mito Action has created several emergency protocols for people with mitochondrial disorders (including LBSL). These include instructions for what to do for vomiting, fever, infection, surgery, and dehydration.
Emergency Planning
Mito Action: Planning for Emergencies
United Leukodystrophy Foundation 2023 Family Conference: Navigating Hospital and ER Visits
Leukodystrophy Family Forum: What Do I Do When I Have to Go to the ER or be Admitted to the Hospital
CDC: Planning for COVID
Genetic Testing and Newborn Screening
Rare Genomes Project (no-cost Whole Genome Sequencing for undiagnosed people suspected of having a rare disease of genetic origin)
Fitness Trackers and Wellness Apps
Healthcare providers often recommend the use of personal wellness tracking devices and apps to help people monitor their activity and other health measures. The information collected by these devices can help people make important decisions about their own health. The data can also provide invaluable information for personalized medical care when shared with the healthcare team. Having this data is especially important for people who have a progressive neurological condition like LBSL.
WEBINARS AND EDUCATIONAL INFORMATION: Cure LBSL Patient Engagement Series: Fitness Trackers and Apps: Powerful Tools for Personal Wellness and Research (January, 2023)