The AHC Foundation

The AHC Foundation https://linktr.ee/ahcf Connect with us!

AHCF's mission is to find the cause(s) of AHC - Alternating Hemiplegia of Childhood, develop effective treatments and ultimately find a cure, while providing support to the families and children with AHC by funding research to accomplish these goals. Secondarily, we strive to promote proper diagnosis, educate health care professionals, the public and related organizations, encourage the worldwide

exchange of information and advance the development of an international database of all AHC patients. Facebook - Official Pages: http://www.facebook.com/
Twitter: http://www.twitter.com/ahckids
YouTube: http://www.youtube.com/user/AHCPresident
Website: http://www.ahckids.org/
Email: [email protected]

Today's the day!Join Dr. Mohamad Mikati as he discusses findings from a landmark international AHC study and what they m...
06/18/2026

Today's the day!

Join Dr. Mohamad Mikati as he discusses findings from a landmark international AHC study and what they may mean for families, care, and future treatments.

đź“… June 18
đź•– 7:00 PM EDT

Can't join us live? A recording will be available on the AHCF website after the webinar so families around the world can benefit from these important insights.

đź”— Registration is still open. Link in bio.

We hope to see you there!

We are pleased to announce a new collaborative research project focused on understanding the brain mechanisms behind Alt...
06/16/2026

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

Jointly funded by RARE Hope, The AHC Foundation, and Cure AHC, 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.

Read the full announcement here.
https://ahcnihjointgrant.tiiny.site

Landmark study. Real insights.Join Dr. Mohamad Mikati as he discusses findings from a landmark international AHC study a...
06/15/2026

Landmark study. Real insights.

Join Dr. Mohamad Mikati as he discusses findings from a landmark international AHC study and what they may mean for families, care, and future treatments.

đź“… June 18
đź•– 7:00 PM EDT

We know our AHC community spans the globe, and this time may not work for everyone. If you're unable to attend live, a recording will be available on the AHCF website following the webinar.

Whether you join us live or watch later, we hope you'll take advantage of this opportunity to learn from one of the leading researchers in AHC.

đź”— Registration is open. Link: https://accountingdepartment.zoom.us/meeting/register/DDXOrtUhQj6CrGrqyzjA8A

Meet Dr. Mohamad Mikati.Few individuals have contributed more to our understanding of AHC than Dr. Mikati.Over the past ...
06/10/2026

Meet Dr. Mohamad Mikati.

Few individuals have contributed more to our understanding of AHC than Dr. Mikati.

Over the past three decades, his work has helped shape the field—from demonstrating that AHC is a genetic disorder to co-authoring the landmark discovery that ATP1A3 mutations cause AHC. He later led groundbreaking gene therapy research and has authored more than 55 scientific publications focused on AHC and ATP1A3.

For many families, the history of modern AHC research is, in part, the story of Dr. Mikati's work.

On June 18th, The AHC Foundation is honored to host Dr. Mikati as he discusses findings from a landmark international AHC study and what they may mean for families, care, and future treatments.

đź“… June 18 | 7:00 PM EDT
đź”— Registration is open. Link in bio.

The results are in.Researchers followed 115 individuals with AHC over three years to better understand how the condition...
06/08/2026

The results are in.

Researchers followed 115 individuals with AHC over three years to better understand how the condition changes over time and which factors may influence outcomes.

Findings from this landmark international study are helping improve our understanding of AHC today and may help shape future therapeutic research.

Join Dr. Mohamad Mikati on June 18th as he discusses what researchers learned and what these findings could mean for families, care, and future treatments.

đź“… June 18th | 7:00 PM EDT

đź”— Register at the link:
https://accountingdepartment.zoom.us/meeting/register/DDXOrtUhQj6CrGrqyzjA8A #/registration

đź“– The study was recently published and recognized as a top article by the Child Neurology Society. Read the publication at link: https://onlinelibrary.wiley.com/doi/epdf/10.1002/cns3.70037

AHC families and caregivers,Family Circle will be on summer break from June through August, and we look forward to gathe...
06/08/2026

AHC families and caregivers,

Family Circle will be on summer break from June through August, and we look forward to gathering again in September!

We. Are. Here.

If you're looking for connection, support, or resources during the summer months, please reach out to AHCF's Family Support Team at [email protected].

Wishing you a safe, relaxing, and joy-filled summer!

đź’™ To all the siblings in our rare disease community: we see you.Being the brother or sister of someone with a rare disea...
06/04/2026

đź’™ To all the siblings in our rare disease community: we see you.

Being the brother or sister of someone with a rare disease can be rewarding—but it can also feel overwhelming, lonely, or confusing at times.

For years, sibling sessions have been one of the most meaningful parts of our Family Meetings, creating a space for connection, understanding, and support.

That's why we're sharing Sibshops, a program where siblings can connect, share, learn, and feel understood by others who truly get it.

Because siblings need support, too. đź’™

See the graphic for program details and registration information.

đź’™ New Research. New Hope. For AHC Families.Researchers led by Dr. Anne Hart at Brown University have developed the first...
06/03/2026

đź’™ New Research. New Hope. For AHC Families.

Researchers led by Dr. Anne Hart at Brown University have developed the first C. elegans (tiny worm) model of Alternating Hemiplegia of Childhood (AHC).

Why is this important?

🧬 Scientists can now study ATP1A3 mutations in a living organism.

🔬 Researchers can test ideas faster and gain new insights into the causes of symptoms experienced by individuals living with AHC.

đź’™ Most importantly, this new tool may help accelerate the search for future treatments.

This multi-year project was co-funded by The AHC Foundation, Cure AHC, and Rare Hope—demonstrating the power of collaboration in advancing rare disease research.

Progress is happening.

One step closer to understanding AHC.
One step closer to treatments.

Read the open-access publication:
https://journals.biologists.com/dmm/article/doi/10.1242/dmm.052809/371577/C-elegans-models-of-alternating-hemiplegia-of

🧬 AHC Genetics InsightVicky Platt, President of The AHC Foundation, was recently invited to participate in the Rare Advo...
06/02/2026

🧬 AHC Genetics Insight

Vicky Platt, President of The AHC Foundation, was recently invited to participate in the Rare Advocate Development Brain Workshop sponsored by Global Genes, the Rare Epilepsy Network (REN), and Mahzi Therapeutics.

During a presentation from GeneDx, we learned more about the current age distribution of individuals identified with a pathogenic or likely pathogenic ATP1A3 variant.

Why does age matter? In genetics, age isn't just a demographic detail—it provides important evidence that helps researchers understand disease risk, penetrance, and clinical actionability.

Swipe through to see what GeneDx data reveals about the ATP1A3 community and why these insights matter for future research.

Thank you to Gay Grossman and GeneDx for sharing this valuable information.

What does the future of AHC look like—and how will researchers evaluate emerging therapies?The AHC Foundation is proud t...
06/01/2026

What does the future of AHC look like—and how will researchers evaluate emerging therapies?

The AHC Foundation is proud to present Dr. Mohamad Mikati for a special webinar discussing findings from the recently completed International AHC Natural History Study, which followed 115 individuals with AHC over three years.

This landmark research is helping physicians better understand the factors that influence outcomes in AHC and will play an important role in the design of future clinical trials, including emerging therapeutic approaches.

Dr. Mikati has dedicated more than three decades to AHC research and has authored over 55 scientific publications focused on AHC and ATP1A3.

đź“… June 18, 2026
⏰ 7:00 PM EDT
🎟 Registration opening soon!

Learn more about the study and why these findings matter for families and future treatments.

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