Michele Levoir Sloan

WORK HISTORY

EDUCATION

ABOUT MICHELE LEVOIR SLOAN

As someone with a heart to give and change the world, you want to be sure that your efforts will truly have an impact on those in need.At the Foundation to Fight H-ABC/Tubb4a we understand that desire. That’s why we provide you with an opportunity to do genuine good in the world: by helping to find a much-needed cure for a debilitating disease that affects roughly 200 children—and counting within which there are multiple variants Watching your own child deteriorate right before your eyes is a pain no parent should ever have to experience. But together, we can make a difference in the lives of families across the globe by giving children with H-ABC/tubb4a related Leukodystrophy a fighting chance.OUR WHYWe started the Foundation to Fight H-ABC in 2015, shortly after our own daughter, Elouise, was diagnosed. Knowing that there are other children and families out there experiencing the same unknowns as us and that there is currently no known cure is what drove us to action.ELOUISE’S STORYBorn in 2005, Elouise initially showed no symptoms of any neurological disorders. She began walking, running, and playing just like any other happy, healthy child her age. Then, at around age 3, she started to pull up her right arm when running. An MRI showed delayed myelination and an undersized cerebellum, which began an endless journey of test after test. Eventually, Elouise was diagnosed with H-ABC, a rare genetic disorder with no known cure—a parent’s worst nightmare…Over the years, Elouise’s condition has continued to worsen. She can no longer stand, bathe, eat, or get dressed without help and has lost her ability to walk. Her inability to speak clearly also impairs her communication. Further, a condition called dystonia causes uncontrolled muscle movement in her arms and neck, which—as you can imagine—is extremely painful.As there is currently no cure for H-ABC, doctors can only treat the symptoms, not the cause. Along with muscle relaxants, Elouise receives quarterly Botox injections to help calm her muscles; however, this treatment is becoming less effective over time. She underwent surgery for partial hip subluxation and spinal fusion due to the force this disease exerts on her muscles. More recently, she had a feeding tube implanted in her stomach as the disease affects muscle tone, which in turn affects eating and choking.Elouise’s story is just one example of how H-ABC evolves in a child. To date, approximately 200 children have been diagnosed with this disease, and that number is on the rise.