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 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.
ASO Research Update
October 2022 – Dr. Alfred George will explain the proof-of-concept experiment for ASO treatment for AHC. Our new effort builds on previously sponsored research, including the original ASO (antisense oligonucleotide) project we sponsored with Dr. George in 2022. This two-part project seeks to answer three essential questions:
- What are the underlying mechanisms of these AHC mutations?
- Is a knockdown ASO treatment appropriate for these mutations?
- What effects does a knockdown ASO have on cells?
Dr. George always does a great job explaining complicated science to our community; What is “knockdown”? We are one of four AHC organizations (AHCF, Cure AHC, Hope for Annabel, and For Henry) to sponsor this research through Dr. Alfred George’s lab at Northwestern University.
Medications: Do No Harm!
January 16th, 2021 – AHC clinicians and researchers discussing medications used to treat the symptoms and compounding conditions associated with Alternating Hemiplegia of Childhood (AHC).
Flunarizine and the Path to Approval
September 19, 2020 – Abbie Burney, an MGH Graduate student under the direction of Dr. Kathy Swoboda, reported on the study she conducted through a survey of AHC family participants using Flunarizine. A retrospective study, documented positive and negative outcomes from the use of the drug as well as dosing and percentage of the population having tried it at one time. The study was intended to be a pathway to obtaining Flunarizine in the U.S.
AAV Gene Therapy
November 2018 – Simon Frost presented an overview, including a discussion of the AAV Gene Therapy Project – The AAV Gene Therapy project is a collaboration of several patient organizations. It is designed to provide a gene correction to the neuron cells affected. This would be a permanent correction! This effort is currently in the Proof of Concept phase. We hope to establish a strong case for the National Institutes of Health to proceed to the Toxicology phase and on to clinical trials. Further, the method we are developing can have broader applications for other gene therapy development in other diseases.
Coping with the Behavior of Those Affected by 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 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.
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.
