Resources for Patients
Information is power. The more informed we are, the more power we have over our health and our future. Here are some resources to help LBSL patients and families become their own best advocates and live the best life possible.
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
Supplemental Newborn Screening (in addition to the state mandated newborn screening which varies by location):
Rare Genomes Project (no-cost Whole Genome Sequencing for undiagnosed people suspected of having a rare disease of genetic origin)
School Resources
It's back to school time!
Cure LBSL Back To School Meeting
It's back to school time! In the community meeting, 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.
Saturday, August 19, 2023, 3:00pm ET.
Link to recording available here: https://vimeo.com/curelbsl/2023backtoschool
These documents were created 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.
Thriving at School with LBSL: For Classroom Teachers
School Needs & Accommodations: For special education and/or disability accommodation teams to create IEPs, 504s, or other accessibility plans
Sample Email to Teachers: Introductory letter to a new teacher (fillable template)
How to Prepare for an IEP Meeting: 2022 LBSL International Conference presentation by Molly O’Brien, MA – Special Education Teacher
Slideshow: CLICK HERE
Patient Care Guides
LBSL Patient Care Guide (coming soon)
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)
WELLNESS APPS OF INTEREST TO LBSL COMMUNITY:
MitoAction Mobile – created for people with mitochondrial disorders like LBSL, this app is great for people who want to record photos, videos, medical records, or other documents and share them with their home and medical care team
Folia – focused on capturing Home Reported Outcomes, this app is very user-friendly and easy to customize.
Bearable – extremely customizable to track anything and see how it affects how you are feeling.
FITNESS TRACKERS: Cure LBSL is considering sponsoring future research using Fitness Trackers, such a Fitbit or Apple Watch. We are also considering commissioning an LBSL-specific wellness app to meet the unique needs of this community.
We are looking for volunteers to help test some fitness trackers and wellness apps. Please reach out to Melody Kisor, Director of Patient Engagement, for more information at mkisor@curelbsl.org.
RESEARCH OPPORTUNITIES USING FITNESS TRACKERS AND OTHER WEARABLES:
ClinicalTrials.gov – enter the term “Fitbit” or “Apple Watch” into the “other terms” field to see studies using these trackers. You can use the “Advanced Search” option to filter by location, age, recruitment status, etc.
All of Us – NIH study using fitness trackers (US Residents only)
MyDataHelps – Platform used by researchers for data collection using wearable trackers
Travel Resources
Medical Transportation
Angel Flight East provides free air transport to qualified patients and their families by arranging flights to distant medical facilities and reuniting families during desperate times.
PALS SkyHope provides free medical flights to people who need to access medical care that may be too far to get to by car.