The AHC Foundation

06/04/2026

💙 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. 💙

See the graphic for program details and registration information.

06/03/2026

💙 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.

💙 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

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.

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.

📅 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.

05/29/2026

💙 Weekend Listening Recommendation

Thank you to the Family Round Table Podcast for sharing this powerful conversation about one father's journey raising a child with AHC.

From the search for answers to the challenges, resilience, and love that define life with a rare disorder, this story will resonate with many families in our community.

More than 20 years ago, his family traveled from Scotland to attend an AHCF Family Meeting, finding connection with other families, access to leading physicians, and firsthand insights into the latest AHC research. Those opportunities have been life-changing for so many families over the past 30 years.

Stories like this remind us why support, research, and community matter so much.

We're already looking forward to bringing families together again at the AHCF Family Meeting in Houston, Texas in 2027.

Learn more about the AHCF Family Meeting: https://ahckids.org/event/ahcf-family-meeting-2027-bigger-in-texas-stronger-together/

🎧 Listen to the podcast: https://www.youtube.com/watch?v=44yiq91cy6Q

Raising children with special needs comes with unique challenges, e...

05/28/2026

Weekend Reading!

💜 Strength in Community. Power in Purpose. 💜

Our newest AHCF newsletter shares the heart of our mission — supporting families, advancing research, and building a stronger future together.

From exciting research updates and educational webinars to community stories and conference news, this issue highlights the incredible resilience and compassion within the AHC community.

Thank you for continuing to walk this journey with us. Every family, volunteer, researcher, advocate, and supporter matters.

📖 Read the newsletter: https://tinyurl.com/2mesd63b

05/26/2026

Before there were large international gatherings for our community, there was this meeting.

Built by families. Driven by hope. Sustained by collaboration.

Join us June 23–26, 2027 in Houston, Texas for the AHCF Family Meeting — where families, clinicians, researchers, and advocates come together to share knowledge, build connection, and move progress forward.

The 2027 AHCF Family Meeting will also include opportunities to participate in important research efforts, including Dr. Nutan Sharma’s Natural History Study, that help advance understanding, care, and future treatments.

For decades, our Family Meeting has been where science and lived experience meet.

Because when families and research come together, progress follows.

💜 Bigger in Texas. Stronger Together.

05/25/2026

This Memorial Day, we pause to honor and remember the brave men and women who gave their lives in service to our country.

Their courage, sacrifice, and dedication will never be forgotten. As we spend time with loved ones today, we hold deep gratitude for those who made our freedoms possible.

From all of us at The AHC Foundation, we remember and honor our heroes. ❤️🤍💙

05/23/2026

AHCF President Vicky Platt proudly represented the AHC community this week at the Global Genes/Rare Epilepsy Network RAD Workshop! 💙

Alongside Rebecca Smith from JAX Labs, Alex Sousa from Broad Institute, and Lacey Henderson, Vicky helped ensure the AHC voice was part of important conversations focused on advancing rare disease and epilepsy research, collaboration, and advocacy.

“We’re grateful to Global Genes and the Rare Epilepsy Network for bringing together such inspiring speakers, researchers, advocates, and organizations,” shared Vicky. “I can’t wait to bring back what I’ve learned from this invite-only workshop and continue moving our community forward together. Thank you to AHCF for supporting opportunities like this and helping make sure the AHC community has a seat at the table.”

05/21/2026

Our hearts are broken as we mourn the loss of Mariel Espinoza Valdez, who passed away at just 13 years old.

Please keep Mariel’s family and loved ones in your prayers as we honor her life and hold them close during this unimaginable loss.

In memory of Mariel, and every child affected by AHC, we will continue pushing forward in the fight for better treatments, better care, and ultimately a cure. 💜