Webinar Series

The AHCF Webinar Series is designed to offer knowledge and tools to the AHC Community which will help you understand AHC better, address quality of life issues, answer your questions, provide access to specialists and connect you to our community. The webinars will cover a wide variety of topics that delve into various aspects of living with AHC.  The AHC Foundation is proud to provide this service to our community while working towards our One Mission of Ending AHC.

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Coping with Behavior of those affected with AHC January 18, 2018 (Rare Disease Day) Alice Belgrade MSEd., LCPC, BCBA, our guest speaker is a board certified behavior analyst and licensed clinical professional counselor. Her experience spans more than 25 years in the fields of education and behavior analysis. She has also attended several AHCF Family Meetings as a guest speaker on behavior.  The first half of the webinar is a presentation covering behavior issues special needs parents deal with, followed by a Q & A session with parents and caregivers.

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Dystonia August 29, 2017 Dr. Sanger is an Electrical Engineer and Child Neurologist specializing in movement disorders of children. His NIH funded research includes work on understanding motor learning in children, work on the use of kinematic measurements of children to design assistive communication interfaces, and multiscale modeling of large-scale neural systems for control, with particular application to understanding the development of spasticity and dystonia. He is the director of the Child Movement Disorders Clinic at Children’s Hospital of Los Angeles. His laboratory has made important recent discoveries on the role of long-latency stretch reflexes in the genesis of childhood secondary dystonia. Among his many awards are: Dystonia Medical Research Foundation Millennium award, Pfizer scholars in pediatric research award, United Cerebral Palsy Leaves of Hope award, Hume scholars award, Stanford Biodesign fellowship teaching award, American Academy of Cerebral Palsy and Developmental Medicine Goldenson award.

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Call to Action and Research Update May 1, 2017  For all AHC families to discuss what we can do to urge our congressional leaders to support the 21st Century Cures Act.  Dr. Al George, from Northwestern University, accompanied by Dr. Kevin Ess, from Vanderbilt University, first gave a synopsis of their current research and then discussed how the families could lobby congress to continue funding the National Institute of Health programs. Without this funding rare disease research will be severely limited. Everyone is urged to keep the pressure up by calling your representative and senator until the bill is voted on in the senate this fall!

Do you have a topic suggestion? Send requests to: sharon@ahckids.org.