AHCF

Time is Running Out! Family Meeting 2025
2025-06-19 08:00 - 2025-06-21 17:00 (America/New_York)
Last chance! Don’t miss the opportunity to meet with the expert AHC community of providers and parents on June 19, 2025. We have researchers, treating physicians, family support and more all speaking on the latest information, and helpful tips and tricks, regarding AHC. Please don’t miss this opportunity to spend time with other AHC parents, and have your kids play or simply hang out with other AHC kids and adults. Moreover, it’s the AHC Foundation’s 30th Anniversary and we are going all out to make this the best Family Meeting yet! Join us!
Meeting Info & Registration Link

ATP1A3 Symposium - September 15 & 16
2025-09-15 - 2025-09-16
The 13th ATP1A3 in Disease Symposium will take place (virtually) on 15 and 16 September 2025 in Cairns, Australia, in conjunction with the 17th International Meeting on P-Type ATPases in Health & Disease

The Program of the 13th Symposium is set up to allow speakers and participants from Australia and Asia Pacific , but also from all other parts of the world to join live or see the recorded sessions soon after the end of the streaming. There are two joint sessions with the 17th P-Type ATPase meeting that will be live-streamed from Cairns (15 Sep, 18:00-19:30 AEST and 16 Sep, 18:00-20:00 AEST). Here, the time schedule of the Symposium. Warm welcome to delegates joining us virtually for the Symposium alone, and to those joining in-person in Cairns, Australia!Registration
To participate in the 13th Symposium, you need to register on the site of the Conference https://iupab.org/atpase-conference-registration/. Early bird registration deadline is 25 July 2025.

Updated Program NEW
Invited Speakers NEW
If you have any issues or questions regarding registration and abstract submission, please email ronald.clarke@sydney.edu.au or melody.li@florey.edu.au

Dystonia Webinar September 24
2025-09-24 12:00 - 13:00 (America/Chicago)
Registration is Now Open for the Dr. Nutan Sharma Webinar!
We are thrilled to announce that registration is now open for our upcoming webinar with Dr. Nutan Sharma, a world-renowned leader in movement disorders.
✨ The webinar is free to attend, but registration is required. When you register, you will immediately receive a confirmation email with the link to join. 👉 https://tinyurl.com/pkjk87pu
Don’t miss this opportunity to learn directly from one of the foremost experts in the field!
#dystoniaawareness #AHCF #CareCantWait

AHCF Family Circle
2025-10-08 13:00 - 14:00 (America/New_York)
You’re Invited!
Join us for our next AHCF Family Circle on Wednesday, October 8th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily

Parent University - Sibling Panel - The Future without us
2025-10-09 13:00 - 14:00 (America/New_York)
Parent University: Sibling Panel – The Future Without UsMany of us hope that siblings will one day step into our shoes — but how do they really feel about that? What do they need to know, and when is the right time to share it?Join Protected Tomorrows’ Parent University on October 9th, 12:00–1:00 PM CT for a powerful Sibling Panel where brothers and sisters share their real experiences, insights, and hopes for the future. Hosted by Mary Anne Ehlert, Partner, Protected Tomorrows October 9, 2025 | 12–1 PM CT Register here: https://protectedtomorrows.com/parent-university…/Let’s start the conversation that helps bring peace of mind — for parents and siblings alike.

NORD Breakthrough Summit
2025-10-19 08:00 - 2025-10-21 17:00 (America/New_York)
Check out this information-filled event!

"Can I Have Joy/Peace Without Being Naive or In Denial?"
2025-10-22 13:00 - 14:00 (America/New_York)
Parenting a child with AHC means facing moments of stress, resilience, purpose, and anticipatory grief.
Join counselor Brad Thompson, MA, LPC-S for a heartfelt session on finding joy and peace — even through naivety and denial.
Practical tools. Real talk. Hope you can hold on to.
Wednesday, October 22
12:00 – 1:00 PM CST (40-minute presentation + 20-minute live Q&A)
Hosted by the Alternating Hemiplegia of Childhood Foundation
Open to all AHC families and caregivers.
Register Here

Season of Giving - Help Ignite the Start of AHC Research Projects in 2026
2025-11-02 - 2025-12-31
Our year-end campaign is here — a season of hope, movement, and possibility for every individual living with Alternating Hemiplegia of Childhood.
You Can Help Light the Path in Three ways:

Send a letter to family members, friends, colleagues, or school/church members – asking for help in lighting the path – then ask them to share with their families and friends. Here are three template letters to use:

Long version – tell your families story
Medium version – great for personal emails and social posts
Short version – perfect for text messages and quick emails

Join the “Light the Path” social media Giving campaign and then please share with your network https://www.facebook.com/AHCKids
Donate yourself to help keep the momentum and exciting progress going https://ahckids.app.neoncrm.com/forms/ahcf-donation-form Or mail a check to AHCF, 2000 Town Center, Suite 1900, Southfield, Mi 48075

Dear Friend of the AHC Foundation,
As 2025 draws to a close, we reflect on the incredible progress made during our 30th anniversary year—and the many families who continue to face the daily challenges of Alternating Hemiplegia of Childhood (AHC). Every step forward in research brings renewed hope for better treatments, improved quality of life, and, ultimately, a cure.
But hope needs fuel. It needs people like you.
This holiday season, we invite you to join us in a powerful movement to Light the Path for AHC Research in 2026. Your year-end gift will illuminate the road ahead for groundbreaking studies, innovative collaborations, and the accelerating search for answers that every AHC family deserves. Three of the projects needing funding in 2026 are:
Duke Univ., Phase 3 Gene Therapy project for D801N & E815K mutations.
Leiden Univ., 5-year joint international study on sleep and Flunarizine.
NIH Project – Using an AHC mouse model, establish the impact of the D801N variant on the brain and cell survival
Together, we can turn scientific potential into real progress. Together, we can bring light to those navigating the uncertainty of this rare disorder.
We are reaching out to ask for your support in raising funds for the AHC Foundation, an organization dedicated to advancing research, improving treatments, and providing hope for families like ours. Every donation, no matter the amount, helps fund scientific studies, medical care advancements, and community resources that bring us closer to finding better therapies—and, one day, a cure.
Please make your tax-deductible contribution before December 31 to help us start 2026 with strength, momentum, and determination.
From all of us at the AHC Foundation, thank you for being the light that guides our mission forward. We wish you peace, health, and joy in the year ahead.
With deep gratitude,
Victoria Platt
President
AHC Foundation

Light the Path for AHC Research in 2026!
2025-11-04 - 2025-12-31
Dear Friend of the AHC Foundation,
As 2025 draws to a close, we reflect on the incredible progress made during our 30th anniversary year—and the many families who continue to face the daily challenges of Alternating Hemiplegia of Childhood (AHC). Every step forward in research brings renewed hope for better treatments, improved quality of life, and, ultimately, a cure.
But hope needs fuel. It needs people like you. Donate Here
This holiday season, we invite you to join us in a powerful movement to Light the Path for AHC Research in 2026. Your year-end gift will illuminate the road ahead for groundbreaking studies, innovative collaborations, and the accelerating search for answers that every AHC family deserves. Three of the projects needing funding in 2026 are:

Duke Univ., Phase 3 Gene Therapy project for D801N & E815K mutations.
Leiden Univ., 5-year joint international study on sleep and Flunarizine.
NIH Project – Using an AHC mouse model, establish the impact of the D801N variant on the brain and cell survival

Together, we can turn scientific potential into real progress. Together, we can bring light to those navigating the uncertainty of this rare disorder.
We are reaching out to ask for your support in raising funds for the AHC Foundation, an organization dedicated to advancing research, improving treatments, and providing hope for families like ours. Every donation, no matter the amount, helps fund scientific studies, medical care advancements, and community resources that bring us closer to finding better therapies—and, one day, a cure.
Please make your tax-deductible contribution before December 31 to help us start 2026 with strength, momentum, and determination. Checks can be mailed to our above address, or online donations can be made at www.ahckids.org.
From all of us at the AHC Foundation, thank you for being the light that guides our mission forward. We wish you peace, health, and joy in the year ahead.
With deep gratitude,
Victoria Platt
President
AHC Foundation

Hands of Hope for AHC - Add Your Photo
2025-11-06 08:00 - 2025-12-21 17:00 (America/New_York)
It starts with our hands — and our hearts.

For the first time, The AHC Foundation, Cure AHC, and AHC Europe are joining together in one global movement — Hands of Hope — to show the world what hope looks like when we hold it together.

Now, it’s your turn:

What hands uplift you and your family on your AHC journey?

The hands that comfort, that create, that heal, that bring joy.

Take a photo of those hands in action — siblings, parents, friends, doctors, teachers, therapists, researchers — anyone who makes a difference.

Then, click the link below to upload your photo, share who they are, what they do, and why it matters.

https://forms.gle/ECZE17YLmjomXmpH8

Every submission will be shared across our social media channels — together creating a global mosaic of love, strength, and hope.

Built by our community, for our community.

Together, we hold the future.

#HandsOfHope #TogetherWeHoldTheFuture #AHCCommunity

AHCF Family Circle
2025-11-12 13:00 - 14:00 (America/New_York)
You’re Invited!
Join us for our next AHCF Family Circle on Wednesday, November 12th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily

“AHC and Epilepsy, Clarity and Confusion”
2025-11-19 13:00 - 14:00 (America/New_York)
💜 Join us for a live webinar Wednesday the 19th @ 1:pm EST. Dr. Kevin Ess, a leading neurologist in Epilepsy and Alternating Hemiplegia of Childhood (AHC) will share insights from the front lines of research and care — what’s next for families and the path to better treatments, then answer your questions!
Dr. Kevin C. Ess’s research integrates molecular neuroscience, human stem cell modeling, and clinical neurogenetics to elucidate mechanisms underlying developmental and epileptic encephalopathies, with a major focus on Alternating Hemiplegia of Childhood (AHC), ATP1A3-related disorders, and tuberous sclerosis complex (TSC). His laboratory has studied how pathogenic ATP1A3 mutations alter neuronal excitability using patient-derived iPSC models, contributing pivotal evidence of impaired Na⁺/K⁺-ATPase function and developing translational platforms for therapeutic discovery.
Clinically, he is a pediatric epileptologist who founded and directs comprehensive rare disease programs, including the AHC and TSC Clinics at Vanderbilt and Colorado Children’s Hospital, and serves on the Medical Advisory Board of the AHC Foundation, linking mechanistic insights to patient care through precision diagnostics and targeted management of neurogenetic disorders.
Registration Link

AHCF Family Circle - You're Invited!
2025-12-10 13:00 - 14:00 (America/New_York)
Join us for our next AHCF Family Circle on Wednesday, December 10th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily
