Cure AHC

08/21/2026

📚✏️ Back-to-school season is here. Some of our champions are already in the classroom while others are gearing up!

At Cure AHC, we’re wishing every student, family, and teacher a wonderful start to the school year. 💙

Let’s help each other make this year a success! Use this thread to share your best tips and tricks for navigating AHC at school.

And if your champion has already started tag us or drop their back-to-school photo below so we can cheer them on! 🎒📸

08/17/2026

Behind the Episode | Every Minute Counts: How One Child in Iceland Sparked a Global Movement

Sigurður Hólmar Jóhannesson is the father of Sunna Valdís, who was born in 2006 and was diagnosed with Alternating Hemiplegia of Childhood (AHC). Sunna is the only person diagnosed with AHC in Iceland.
Following her diagnosis, Sigurður founded the AHC Association of Iceland and later co-founded the AHC Federation of Europe, where he currently serves as President. He also co-founded the AHC International Alliance, bringing together patient organizations from around the world to advance collaboration and research.
Sigurður is COO of Góðvild (Goodwill), an Icelandic charity supporting children and adults with disabilities and their families.
He is the executive producer of the award-winning documentary Human Timebombs (2015), which tells the story of families living with AHC, and A Rare Journey (2025), an award-winning documentary highlighting the lives of children with rare diseases in Iceland.
Before dedicating his career to patient advocacy and entrepreneurship, Sigurður worked as an air traffic controller. Today, he is the owner and CEO of Mobility and Ozon, companies focused on improving quality of life through mobility solutions and health products.

www.ahc.is

www.ahceurope.org

www.ahcim.com

www.humantimebombs.com

www.mobility.is

www.betridagar.is

Miles’ Obituary: https://memorials.standardfuneralcenter.com/miles-powell/5722988/

Spotify: https://open.spotify.com/episode/1g1vYR4w6bDqAozYoowx3B?si=mc41QAxJTs-mOCWARA41gQ&utm_source=copy-link

YouTube: https://youtu.be/Mf6ZWxHL6vc?is=TOU6YKhBtnbLCMQb

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

Landry

08/17/2026

Set your alarms for tomorrow9pm EST!

https://zoom.us/j/96823242271

🎙️ AHC After Hours 🎙️

🌙 For the caregivers who never clock out

This virtual group is a chance to:
💬 Connect with others who truly get it
🤝 Share encouragement and ideas
☕ Take a little time for yourself
🎙 Explore special topics and guest-led sessions

And because we know AHC kids don’t always sleep on schedule (or at all!), caregivers are always welcome to join with their child if needed. This is a flexible, judgment-free space for real-life connection and encouragement.

08/09/2026

Our hearts are shattered for one of our own.

Over the weekend, Jett Killworth (AHC/ATP1A2) suddenly and tragically lost both of his parents, Kimberly and Kevin Killworth.

Jett is safe and surrounded by family, and his older sisters have now stepped into the role of becoming his primary caregivers.

There are simply no words for the grief and heartbreak this family is facing. While we cannot take away their pain, we can come together as a community to help ease some of the financial burden that lies ahead.

We are asking the entire AHC community, and everyone whose heart is moved by Jett’s story, to please help however you can. No contribution is too small.

Please feel free to share or donate to the family’s private fundraiser:
https://www.giveinkind.com/inkinds/E2F6E7H

We kindly request that everyone respect the family’s privacy in this difficult time. Please keep Jett, his sisters, and everyone who loved Kimberly and Kevin in your hearts during this unimaginable time. ❤️

Alyssa, Jett, and Daley are navigating an unimaginable tragedy. Days ago, they suddenly and unexpectedly lost both their mother, Kimberly Killworth, and their stepfather, Kevin Killworth. This horrific loss leaves Alyssa (27), Daley (22), and Jett (11) without their mother and stepfather. It also le...

08/06/2026

COMING SOON! This week, we go Behind the Episode with one of the AHC community’s favorites, Siggi!

Sigurdur Johanneson of Iceland, President of AHC Europe and father to Sunna, stars alongside his daughter in Human Timebombs, a powerful documentary that shares their family’s journey with AHC.

As a longtime parent and advocate, Siggi has a message every AHC family needs to hear:

“You are not alone.”

Don’t miss this inspiring conversation filled with wisdom, hope, and the reminder that no family faces AHC alone. 💙

08/02/2026

It’s officially August, which means back-to-school season is just around the corner! 🍎📚

Throughout the month, we’ll be sharing resources to help make this school year a success for students living with AHC and the families, educators, and support teams who walk alongside them.

Navigating school with AHC takes preparation, advocacy, communication, and a strong team. That’s why our first featured resources come from the Epilepsy Foundation of America, whose educational materials can also be incredibly helpful for many families navigating neurological conditions.

Their resources include:
📖 Epilepsy & Seizure Safe Classroom Kits
🧑‍🏫 Teacher Toolkits
📚 Educational materials for school staff, students, and caregivers

While these resources were created by the Epilepsy Foundation for epilepsy education, many of the strategies for emergency preparedness, classroom communication, and staff education can be valuable for the AHC community as well.

Thank you to the Epilepsy Foundation of America for creating and providing these free educational resources. Stay tuned throughout August as we continue sharing more back-to-school tips and tools to help every student start the year with confidence!

For more information: https://www.epilepsy.com/school?utm_source=hootsuite&utm_medium=instagram&utm_term=be213231-1ae5-4c57-a756-ea912df27cf7&utm_campaign=empowerd&fbclid=PAVERFWATcXHFwZG9mAmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDzEyNDAyNDU3NDI4NzQxNAABp_CzxEDLaCd81YFq-kIJKx1Etxa4TLMkcPXYv5Gty6CRMPtFjWUI-3B3x6RS_aem_FSJet80UTNjdoJG7iariVA

07/30/2026

Many families experienced firsthand just how incredible and professional the NAPA Center team is during the research evaluations at our Family Meeting. 💙

Now, the NAPA 2027 Intensive Schedule is officially available! This is a great opportunity to reserve your spot and start working toward your PT and OT goals for the year ahead. We can’t wait to see more AHC families take advantage of this amazing program!

For more information: https://napacenter.org/intensive-registration-process/

07/22/2026

🌍 We’re quickly approaching the 2026 ATP1A3 Symposium in Paris, hosted by AHFA and AHC Europe!

This special event is a wonderful opportunity for international families, researchers, clinicians, and advocates to come together and hear the latest presentations on ATP1A3-related disorders. For those unable to attend in person, a virtual option will also be available to watch live.

Several Cure AHC board members will be attending, and we look forward to connecting with even more AHC families from around the world!

Register here: https://www.atp1a3-disease-symposium.org/seite.mv

07/21/2026

Cure AHC is proud to celebrate an important step forward for children and families affected by rare neurological diseases.

Today, The New York Times highlighted the ARPA-H THRIVE program and the launch of the Broad Institute’s Center for Therapeutic Genomics, an ambitious new effort designed to accelerate precision genetic medicines for children with rare conditions, including Alternating Hemiplegia of Childhood.

We are deeply grateful to the extraordinary scientists, clinicians, advocates, and partner organizations helping move this work forward, including RARE Hope, the Broad Institute, Boston Children’s Hospital, The Jackson Laboratory, Children’s Hospital Colorado, and the many others committed to transforming promising science into meaningful treatments.

Progress like this brings real hope to the AHC community. Congratulations to everyone who helped make this milestone possible. We look forward to what comes next.

Read the article: https://www.nytimes.com/2026/07/21/health/gene-therapy-rare-diseases-epilepsy.html?unlocked_article_code=1.zVA.wgsx.0gDgaIPndolo&smid=url-share