The AHC Foundation

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. 💜

05/20/2026

🚨 We’re LIVE TONIGHT! 🚨

Join us for our
✨ Protecting Your Loved One’s Future Webinar ✨

These are important conversations every special needs family should hear — covering future planning, financial security, legal guidance, and peace of mind for the road ahead.

🕕 Starts at 6 PM CT
🔗 Register now & join us live: https://us02web.zoom.us/webinar/register/WN_r_SXL-kTQ6W02_onrknsEQ

05/20/2026

These conversations can be emotional and overwhelming — which is often why families put them off.

But planning for the future of our loved ones is too important to avoid.

As our children and adults with special needs grow, so do the questions surrounding long-term care, financial security, legal planning, family transitions, and quality of life. Many families know they need to plan, but don’t know where to begin.

That’s why we hope you’ll join us TONIGHT for our:

✨ Protecting Your Loved One’s Future Webinar ✨

Featuring Mary Anne Ehlert of Protected Tomorrows, this important presentation will provide practical guidance, trusted resources, and meaningful conversations to help families navigate the future with greater confidence and peace of mind.

This is information every family should hear.

📅 TONIGHT
⏰ 6:00–7:30 PM CT
🔗 Registration link: https://us02web.zoom.us/webinar/register/WN_r_SXL-kTQ6W02_onrknsEQ

05/18/2026

We’ve always had planning meetings for Asher over the years, but as our children grow and their needs change, those conversations evolve too. And honestly… it can be incredibly emotional and overwhelming.

Lately, I’ve found myself losing sleep, carrying anxiety, and realizing just how heavy future planning can feel for special needs families. We all want to protect our loved ones, but knowing where to start — or how to adjust plans over time — isn’t always easy.

That’s why I truly hope families will join us for our upcoming:

✨ Protecting Your Loved One’s Future Webinar ✨

Featuring Mary Anne Ehlert of Protected Tomorrows, this presentation will provide practical guidance, trusted resources, and meaningful conversations to help families navigate long-term planning with greater confidence and peace of mind.

This is information I genuinely believe every family should hear.
🩵 Cate

📅 May 20
⏰ 6:00–7:30 PM CT
🔗 Register here: https://us02web.zoom.us/webinar/register/WN_r_SXL-kTQ6W02_onrknsEQ

05/15/2026

Every family wants to feel confident about the future of their loved one.

But planning for long-term care, financial security, legal protections, and family transitions can feel overwhelming — especially for special needs families.

That’s why we’re excited to welcome Mary Anne Ehlert of Protected Tomorrows for our upcoming:

✨ Protecting Your Loved One’s Future Webinar ✨

Join us as we discuss practical tools, important resources, and compassionate guidance to help families plan with greater confidence and peace of mind.

📅 May 20
⏰ 6:00–7:30 PM CT
🔗 Register here: https://us02web.zoom.us/webinar/register/WN_r_SXL-kTQ6W02_onrknsEQ

05/14/2026

Some people enter a community and quietly become part of its heart 🤍

I’ve had the privilege of working alongside Sylvia Pollard on the AHCF Communications Team, and I’ve seen firsthand the compassion, honesty, encouragement, and deep care she brings to families walking the AHC journey.

What makes Sylvia so special is her belief that while the pursuit of a cure matters deeply, caring for families along the way matters deeply too. She reminds parents they are not alone. She leads with empathy, faith, perseverance, and genuine love for this community.

I could not be more grateful to welcome Sylvia Pollard to The AHC Foundation Board of Directors. I know the same heart she has already poured into families will continue to impact our community in meaningful ways.

Please join me in celebrating and welcoming Sylvia 🤍

With gratitude,
Cate 🤍