Join other AHC families in Glendale California this summer to hear from top AHC professionals, researchers, physicians, parents and other experts on the hottest AHC topics. We are devoting 2 1/2 days to meet, discuss, learn and exchange ideas. Schedule free consultation appointments with AHC specialists, learn about the episode and medication log and become part of the AHC Natural History Database, getting us ready for future clinical trials.  Bring your family and socialize with the largest gathering of AHC patients in the world. Journey to the 2020 AHCF Family Meeting this June and get energized by the wonderful support of our AHC community!

Agenda

Included in this years presentations:

Research -  The latest information on the progress of AHC/ATP1A3 projects including:

  • AAV Gene Therapy
  • Vanderbilt - human neurons, ISP cell lines and antibody development
  • Northwestern - function and pharmacology of ATP1A3 mutations in human neurons and mice.
  • Massachusetts General/Harvard - Natural History development for clinical trials
  • Xenon update on the Flunarizine study

Medical

  • Is this AHC? Description and video clips of questionable symptoms that may be associated with AHC
  • What effects the different episodes have on various organs and parts of the body
  • How does AHC change in adulthood - developmental aspects of AHC and med interactions
  • Controlling Dystonia - triggers and treatments
  • Differences between ATP1A3 - ATP1A2 -No known mutation
  • Expert Physician panel - Have all your questions answered here.

Family - Living with AHC

  • Exploring educational avenues for all ages
  • AHC in Adulthood- care, education, social and work opportunities, connecting to the community, attacking isolation
    • How dynamics change with parents and adult child
  • Behavior - Two separate sessions
    • (addressing issues of children aged 0-11)
    • (addressing issues of young adults 12 to adulthood)
  • Coping mechanisms and ways to manage parents/caregivers health in the chaos of AHC
  • Aging parents and dilemma of how to provide for your child after you're gone
  • Sibling session moderated by an adult AHC Sibling
  • Mobility and equipment for safe care
  • **** Individual Family stories throughout the conference
  • What AHCF is all about

 

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