Cure AHC

Happy Father’s Day 💙🧡🤍

To the fathers who finish a long day at work only to come home and put on their advocate hat, diving into research, making calls, attending appointments, and doing whatever it takes to fight for their child.

To the dads who stay calm in the middle of a crisis, who carry their children through episodes, comfort them through the unknown, and provide unwavering strength when their families need it most.

To the fathers who have become caregivers, protectors, problem-solvers, therapists, researchers, and relentless champions for better treatments and brighter futures.

To the dads who celebrate every milestone, no matter how small. A successful therapy session, a peaceful day, a laugh, a step forward—because you understand that every victory is hard-earned and worth celebrating.

To the bereaved fathers carrying both immense love and immeasurable loss, we honor your children and stand with you today and always.

And to every father figure walking this AHC journey with quiet determination, steadfast courage, and unconditional love: we see you.

Your strength steadies your families. Your advocacy drives progress. And your dedication gives hope to an entire community.

We are pleased to announce a new collaborative research project focused on understanding the brain mechanisms behind Alternating Hemiplegia of Childhood (AHC).

This project is made possible and led by Nina Frost from RARE Hope.

Jointly funded by RARE Hope, Cure AHC, and The AHC Foundation this NIH/NINDS study will explore how ATP1A3 mutations affect cerebellar circuits involved in movement and coordination. Researchers hope to better understand why episodes of dystonia, hemiplegia, and other paroxysmal symptoms occur in AHC.

By investigating the brain circuits involved in these symptoms, this work may provide important insights into disease mechanisms and help create a foundation for future therapeutic development.

We are grateful for the continued collaboration across the AHC community that makes research like this possible.

💙 From Izzie Duval, VP of Patient & Family Support:

One of the questions I hear most often from families in our community is: How do we handle these behaviors?

Whether it’s aggression, emotional outbursts, anxiety, rigidity, impulsivity, meltdowns, or behaviors that seem to come out of nowhere, families affected by AHC and related disorders are often left feeling exhausted, overwhelmed, and hopeless.

Many of us start with traditional parenting strategies or even neurodivergent-informed approaches. Yet so often, the advice that works for other children seems to make things worse, not better. Finding professionals who truly understand this complexity and have strategies to help is incredibly challenging.

That’s why I am so excited to introduce Eileen Devine, LCSW, to the AHC community!

Eileen’s journey began as a parent herself. After adopting her daughter with FAS and developmental differences, she and her husband—an educator—found themselves facing many of the same challenges our families experience. The traditional approaches weren’t working. Determined to find a better way, Eileen discovered and immersed herself in Brain-First perspectives on behavior, a framework that transformed her family’s life and ultimately became her life’s work.

Today, Eileen is an internationally recognized speaker, parent educator, and host of the Brain First Parenting podcast. She has presented for organizations including the Child Neurology Foundation and the Lennox-Gastaut Syndrome Foundation, and offers parent courses, support groups, global virtual consultations, and educational resources.

I genuinely believe Eileen’s work will be an invaluable resource for our global community, and I am thrilled that our families will have the opportunity to learn from her.

I hope you’ll join us for Eileen’s presentation and live Q&A on Saturday, June 27 from 3:00–4:30 PM EDT, available to both in-person and virtual attendees and recorded for later viewing.

If you can’t attend live, feel free to send us your questions ahead of time and we’ll do our best to include them in the discussion.

— Izzie Duval, VP of Patient & Family Support

We’re just 13 days away from the Cure AHC Family & Science Meeting!

One of the most meaningful parts of this event is seeing AHC parents working hand-in-hand with researchers to make studies more accessible and less intimidating for our children. Annabelle and Archie are getting ready for this summer’s research by practicing with their EEG swim caps and sleep masks provided by the research team. 🧠 By turning unfamiliar procedures into something fun and familiar at home, we can help reduce anxiety and set our kids up for success. ( a huge shout out to the planning teams from Cure AHC, RARE Hope , and For Henry AHC !)

There’s still time to register virtually, so don’t miss the opportunity to learn from leading experts, hear the latest research updates, and be part of a community working toward a cure.

We can’t wait to see you there! 💙🧡

Register For Virtual Here: https://cureahc.charityproud.org/EventRegistration/Index/26166

We’re getting excited for the 2026 Cure AHC Family Meeting!

Over the coming weeks, we’d like to start highlighting some of the incredible experts and researchers who will be sharing at this year’s meeting. We’re kicking things off with our Drug Panel: The Science of Investigating New Drugs for AHC, led by Nina Frost, Founder of Rare Hope, who will guide this important conversation on the future of AHC therapeutics.

This multidisciplinary discussion will explore how potential therapies for AHC are identified, evaluated, and advanced toward patients. From innovative drug repurposing strategies and laboratory models to the challenges of moving promising treatments into clinical trials and patient care, attendees will gain insight into the entire drug development pipeline—including the opportunities, risks, and critical decisions along the way.

We know there has been a lot of discussion following the recent news surrounding Brown University’s worm model study. We’re especially looking forward to hearing directly from the research team involved in that work, alongside updates from other internationally recognized researchers who are helping shape the future of AHC science.

There’s still time to join us virtually! Don’t miss this opportunity to hear from leading experts, learn about the latest advances in AHC research, and be part of the conversation as we work together toward better treatments for our community. 💙

Register Here: https://www.cureahc.org/family-meeting

💙🧡 Cam is repping and raising awareness for AHC🧡💙

Have you checked out the Cure AHC store yet?!
https://www.cureahc.org/store

Every purchase helps fuel awareness, advocacy, family support, and research for Alternating Hemiplegia of Childhood. Whether you’re repping AHC at the Family Meeting, at home, or out in your community, you’re helping make this disease impossible to ignore.

💙New designs
🩵Youth + adult options
🧡Community-inspired apparel
💛Supporting the mission to Cure AHC

Shop now and grab your favorites before the June Family Meeting!!

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📍Registration for the 2026 Cure AHC Family Meeting is still OPEN!

Join us this June in Boston for connection, education, research updates, and community with families and leading AHC researchers from around the world.

✨ In-person and virtual attendance options available.

Register here: https://www.cureahc.org/family-meeting

We are back!

This episode we are discussing all things Family Meeting! Hear from Izzie and Hannah as they discuss what not to miss, featured guests, and how to join from anywhere!

We can’t wait to see you all in 22 days!

Family Meeting Registration: https://www.cureahc.org/family-meeting

YouTube: https://youtu.be/zZZwLBROEAI

Spotify: https://open.spotify.com/episode/3duP6lpegsNQpJTRN9ldw5?si=Lsc5FSOTR_m3bTVcL3oyGQ

Apple Podcasts: https://podcasts.apple.com/us/podcast/behind-the-episode-an-advocacy-podcast-by-cure-ahc/id1881076654?i=1000771012461

We are officially ONE MONTH away from the 2026 Cure AHC Family & Science Gathering! 💙🧡

We’re excited to finally share the agenda for this year’s meeting! The weekend includes the latest research updates from world-class AHC researchers, live expert Q&As, an experienced parent panel, brain-first behavior support with Eileen Devine, and caregiver mental health support with Amanda Griffith Atkins.

Virtual attendance is available again this year. Virtual attendees will be able to watch presentations live and participate in live Q&A sessions throughout the weekend.

Virtual registration is $50.

A few time zone conversions for live sessions:
• California — 6:00 AM PDT
• Chicago — 8:00 AM CDT
• London — 2:00 PM BST
• Central Europe — 3:00 PM CEST
• Dubai — 5:00 PM GST
• São Paulo — 10:00 AM BRT
• China — 9:00 PM CST
• Australia (Sydney) — 11:00 PM AEST

🧡You can view the full agenda here: https://static1.squarespace.com/static/5bdfc7a3cef372e7bbfcb463/t/6a1dadd2ab0f493a33ec674c/1780329962252/Meeting+Agenda

🩵To register for virtual attendance: https://cureahc.charityproud.org/EventRegistration/Index/26166?fbclid=IwY2xjawQDFAZleHRuA2FlbQIxMABicmlkETIxakZpaXcwNlpHYTlNcG9sc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHk_R6S8mJqHLSKAgXN1oS8tIiy4eL-nAoAcXtl3olG7BWlhvlJOieC_MC00X_aem_2y3PUqrvGL760Vnv2ykyFQ