foundation to fight H-ABC
The Foundation to Fight H-ABC was established in 2015 to spread awareness, improve quality of life, and work toward finding a treatment and cure for the degenerative children’s disease Hypomyelination with Atrophy of the Basal ganglia and Cerebellum (H-ABC). H-ABC is a progressive neurological condition at the most severe end of the TUBB4A-related leukodystrophy spectrum. Children affected by H-ABC slowly lose control of their motor skills, losing the ability to sit, stand, talk, or walk on their own. Ultimately children suffering from H-ABC succumb to the disease before they reach adulthood.
Watching your child deteriorate physically and mentally right before your eyes is a pain no parent should ever have to experience. Together we can make a difference in the lives of families across the globe by giving children with H-ABC, and other TUBB4A-related leukodystrophies, a fighting chance. A cure is within reach, help us get there!
LATEST NEwS
our dATA COLLECTION has launched!
We have been working with Rare-X to launch our HABC/TUBB4A Data Collection. This is an h-abc patient’s opportunity to have an influence on clinical trial design and ensure we are heard and included. It can help accelerate the research and development of new drugs, devices, and other therapies.
See Resources/Rare-X page on our website for more information, or connect below to the link to sign up and participate in the database:
Our Mission
With support from generous people like you, the Foundation to Fight H-ABC aims to spread awareness about this rare genetic disorder and help the children who suffer from it. Our mission is to raise money for research on gene therapy treatments that could stop the degenerative effects of this disease.
Raising awareness and research does more than help those with H-ABC, it also helps doctors make head way with other Leukodystrophies, and understand more about the white matter of the brain overall.
And by standing with us and joining our fight, you can become a hero to a child in need.
Just because a disease is rare does not mean it should receive less attention or scrutiny. These children need your help, and they shouldn’t be overlooked. Moreover, research on similar conditions has been groundbreaking, and the research currently underway for H-ABC can potentially be applied to other neurological conditions—saving even more lives in the process.
Our mission is to promote awareness, support affected families, and fund new and existing research tied to H-ABC, and other TUBB4A-related leukodystrophies.
Vision: Our vision is to eradicate all childhood leukodystrophies, and to provide hope for those affected and their families. Every child matters.
Goals:
Diagnosis: Proactively promoting awareness as many children are easily misdiagnosed and undiagnosed.
Quality of Life: Actively working to improve the quality of life for affected children and their families.
Fundraising: Raising money for research on gene therapy treatments that could stop the degenerative effects of this disease.
