Alternating Hemiplegia of Childhood FoundationAlternating Hemiplegia of Childhood Foundation

Donate/

Menu

  • Home
  • About AHC
    • What is AHC
    • AHCF Can Help
    • Genetic Testing for AHC
    • Medication
    • What AHC Looks Like
    • Patient Care
    • Family Care
      • ABLE Act
    • Compounding Conditions
    • Glossary
  • Research
    • Research Projects
      • AAV Project
      • Natural History Database Project
    • Research Studies
    • Databases
    • AHC Bibliography
    • AHC in Charts
    • Grant Requests
  • The Foundation
    • Overview
    • Board of Directors
    • Medical Advisory Board
    • Policies and Info
      • Website Term & Conditions
      • Copyright Statement
      • Trademarks & Servicemarks
      • Privacy Policy
      • Conflict of Interest Policy
      • Financials
  • Fundraising
    • Contribute
    • Fundraising Overview
      • Media Resources
    • Where Funds are Directed
    • Hosting an Event
    • Fundraising Ideas
    • Fundraising Resources
  • Community
    • Engage
    • Webinar Series
    • Get Involved
      • Volunteer
      • Fundraise
      • Contribute
    • Who is AHC?
    • Family Meetings
      • New Jersey 2018
      • Indianapolis 2016
    • AHC Organizations
  • Resources
    • AHCF Can Help
    • Webinar Series
    • Fundraising Resources
    • Media Resources
    • Glossary
    • Helpful Links
    • Site Map
  • Contact us!

Welcome to the 2021 Virtual Family meeting!

AHCF is pleased to present our 12th “Family Meeting”! You are invited to join us on Saturday June 26th and Sunday June  27th as we come together virtually to learn about the latest Research, Living with AHC, Behavior issues, Special needs Financial planning, “Ask the Doctor” and “Experienced Parents” panels!

Register Here

Register

Please invite your local Neurologist and other medical and educational personnel if they would like to learn about AHC. Everyone who attends must register!

Meeting Agenda

Download

Sibling Session

Continuing the tradition with Ryan Andrasco, brother to Kiley, moderating.

Parent Panel

parent interactions, managing episodes on your own, when to see a Doctor, dystonic storm, dehydration, helpful equipment

Ask the Doctors

Submit your questions through June 15th for the panel discussion.
email kelly@ahckids.org

Research Updates

From patient databases to mouse models and genetic therapies, we have it covered.

Behavior

Presentations on behavior issues in children and adults with AHC.

Financial Planning

Special needs financial planning has some specialized considerations.

Get Ready!

The following video presentation links are provided for your review.
Perhaps they will trigger questions for us to address at the meeting.

  • Gene Editing – Dr David Liu – Can we cure genetic diseases by rewriting DNA?  https://www.youtube.com/watch?v=ONs9FCY74p0
  • Gene Editing – Dr David Liu – Rewriting Life https://www.youtube.com/watch?v=wgui4s8V0eE&t=4s
  • Medication in AHC – Do No Harm https://www.youtube.com/watch?v=LqQ-PmD0Cu8&t=7033s
  • Epilepsy and AHC Medications – Dr Kevin Ess https://www.youtube.com/watch?v=UkpOo4heTKQ&t=122s
  • Dystonia Management and AHC – Audio only Dr Terry Sanger https://www.youtube.com/watch?v=jyjXYkSmciE&t=1934s
  • History of AHC and Diagnosis – Dr Ken Silver & Dr Sho Yano 2016 https://www.youtube.com/watch?v=z8WgUku5isc
  • Human Timebomb – https://ahcim.com/2016/04/08/full-version-human-timebombs/

Meet the Presenters

Click Here

Can I help offset some of the costs of this year’s family meeting?

Contribute

F.A.Q.

What if I can not attend?

Attending these presentations is always the best way to participate, but we understand that our schedule doesn’t work for everyone. Presentations will be recorded and published to our youtube channel as they are allowed by the presenter. From there you can revisit a presentation or hear it for the first time. Many of our past presentations are published, and continue to be a useful resource.

Why are we going virtual this year? Isn’t the pandemic over?

Much time is needed to plan an in-person meeting, including reserving hotels and blocks of rooms, etc. At the time of planning the hotels and air travel industries were not favorable to in-person conferences. Since the pandemic is not “over”, the AHCF does not want to promote an important event that would place families at risk of health complications. We know in-person meetings are best for so many reasons. We hope to be in-person at our next family meeting!

Can we send questions ahead of time?

YES! We are gathering questions for the Behavior sessions, the Parent panel and the Physicians panel. Although we will answer questions that are presented at the meeting we would like to be able to send questions for these sessions to the speakers beforehand. Send all of your questions to Kelly Andrasco  kelly@ahckids.org. the deadline to submit questions is June 18th.

Will the presentations be translated into Spanish?

Unfortunately, we don’t have the capability to translate while live streaming but we are going to try adding Spanish subtitles to each presentation later, when it is posted on our website/you tube site.

Can we invite our Neurologist or Physical Therapist to attend?

YES! Please invite any professional that is involved with your child’s care that you feel would be interested. Please remember that everyone Must Registerhttps://zoom.us/meeting/register/tJIkcOusqTIoHNxYWjZ57IXyoOwL3eTZUlvX

Check back here for updates and latest info for the meeting!

Contact Us
Alternating Hemiplegia of Childhood Foundation 2000 Town Center Suite 1900 Southfield, MI 48075
(313) 663-7772
Say what? Translate here.
Newsletter Subscription
Subscribe to our Email Newsletter
Our Partners

We're Doing All Right!

Alternating Hemiplegia of Childhood Foundation Inc Nonprofit Overview and Reviews on GreatNonprofits
Volunteer. Donate. Review.

Copyright © 2023 · All Rights Reserved · Alternating Hemiplegia of Childhood Foundation