Meeting Summary and Presentation Videos
The CHOP Leukodystrophy Center would like to extend a huge ‘THANK YOU’ to families and guests who traveled great distances to attend the 2018 H-ABC Family Conference on Saturday, October 27. We would also like to thank all those who tuned in via live broadcast.
Attendees had an opportunity to learn about the latest research on H-ABC and other TUBB4A-related leukodystrophies, and share resources and best practices in discussion with our expert clinicians and therapists.
This day was all about sharing smiles and connecting families, and deriving strength from knowledge and shared experience. We look forward to seeing you at our next family event!
Session I: Research Updates on H-ABC and TUBB4A-related Leukodystrophy
Session II: Clinical Management Approaches and Resources
Session III: Working Together: A Word from Our Advocacy Partners
“We created the Foundation to Fight H-ABC because there is currently a lack of awareness surrounding H-ABC. It affects our family and others like ours, in a very real way, but we understand that most people have never heard of H-ABC. Just because a disease is rare does not mean it should receive less attention or scrutiny. Moreover, research on similar conditions has been ground-breaking, and the research currently underway for H-ABC can potentially be applied to other neurological conditions. ”