Our Impact

Cure LBSL is a registered non-profit organization dedicated to raising awareness and funds for research into LBSL, a progressive and very rare genetic disorder that affects the brain and spinal cord; most often developing in children, affecting their ability to walk, then even to stand and coordinate fine and gross motor skills. LBSL can also impact infants and adults. Disease severity often correlates with age of onset. We provide information and support to families and individuals living with the disease.

Read our 2023 Annual Report for more information:

Giving Hope to Families

“Your donations transformed LBSL from a rare disease with no cure in sight, to a rare disease with an entire medical team working on a cure. They helped connect me and my family to others affected by this condition. Your support has given our family hope.”

– Hazel’s Mom (Wisconsin)

“A Cure for Ellie (now Cure LBSL) was the first source of help we found after our family received the LBSL diagnosis. Ellie and her family gave us the strength and hope we desperately needed when everyone else was telling us there was none. We are forever grateful and blessed to have found Ellie and her family.”

– Dean & Dalton’s Mom (Missouri)

Suffering from such a rare disease means finding a drug therapy will never be a priority for the pharmaceutical industry and it may never come in time…but because of your support for this foundation, we now have a voice and the chance to find a breakthrough therapy.

– Tasso’s Mom (Greece)

What Impact Will Your Donations Have?

  • Bring hope to children and families suffering with LBSL​

  • Fuel cutting-edge research that will unlock the mysteries behind this disease and identify the keys to a cure​

  • Help patients around the world participate in clinical studies​

  • Help desperate parents learn about the disease and therapeutic options​

  • Allow families to connect and support one another​

  • Enable cooperation between researchers​

  • Amplify the patient voice in the medical and scientific communities​

  • Facilitate patient engagement and advocacy efforts with the FDA