The AHC Foundation

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The AHC Foundation

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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]

10/06/2026

Some people join an organization. Others become part of its story.
For more than 20 years, Kelly Andrasco has been an extraordinary part of the AHC Foundation — and today, we are thrilled to welcome her to our Board of Directors.

Kelly’s journey with AHC began when her daughter, Kiley, now 25, was diagnosed at age two. Since then, Kelly and her entire family have poured their hearts into supporting the AHC community.

For 15 years, Kelly joined the Platt family in hosting the AHCF Chicago Walk. For more than a decade, she worked alongside her parents on their annual AHCF Golf Outing. And throughout the years, she has given her time and talents to fundraising, family support, Family Meeting planning, the website, and wherever else she was needed.

Kelly’s commitment to turning compassion into meaningful action has been so extraordinary that the Foundation named its Compassion to Action Volunteer Award in her honor — with Kelly fittingly named its first recipient.

Now, after more than two decades of showing up, stepping in, and helping move AHCF forward, Kelly is taking her place at the Board table — bringing with her the experience, perspective, and deep understanding of our families that can only come from years of service.

With a voice and a vote in the decisions that shape our Foundation’s future, Kelly will now help guide the work she has supported for so long.

For Kelly, joining the Board isn’t the beginning of her service to AHCF. It’s the next chapter in more than 20 years of dedication to a community she considers family.

Please join us in welcoming Kelly Andrasco to the AHCF Board of Directors. 💜

10/04/2026

Paris gave us a pretty spectacular backdrop, but the people made the evening. 💜

Families, physicians, researchers, advocates, and friends from around the world—coming together on the Seine to laugh, connect, and simply enjoy being together.

One of the most special parts of this community is how relationships built around a shared purpose grow into genuine friendships that cross countries, organizations, and years.

A beautiful night in Paris with some truly wonderful people. Until we meet again. 🇫🇷✨

10/01/2026

Some of the most important conversations happen outside the conference room.

On the eve of the International Symposium on ATP1A3 Disorders in Paris, the AHC Foundation had the opportunity to bring together physicians, researchers and members of the AHC community for dinner.

Many of the people around this table have been part of the AHC community for years. We’ve worked together, learned from one another, tackled difficult questions and celebrated progress together. And somewhere along the way, colleagues and collaborators have also become friends.

It was a chance to reconnect before the symposium began, welcome new faces, exchange ideas, laugh, share a meal and simply enjoy being together.

In a rare disease community, these relationships matter. Progress is built through science, but also through trust, collaboration and people who remain committed to moving the work forward together.

We’re deeply grateful for the expertise around this table—and for the friendships that have grown alongside it.

Colleagues. Collaborators. Friends. One pretty special evening in Paris. 🇫🇷💜

09/30/2026

It is with profound sadness that we share the passing of another beloved child in our AHC family, at just 17 years old.

His mom shared these beautiful words:

“To my sweet baby boy,

Mommy, Daddy, and Sissy are going to miss you so much. You fought so hard in your 17 years of life. Your smile could light up any room, and your eyes could tell a story.

We love you, sweet boy, and will miss you forever. I hope you’re running, dancing, and laughing in heaven—and watching endless episodes of SpongeBob.

You can rest now.”

Our hearts are with his family and all those who loved him. We will remember his beautiful smile, his strength, and the joy he brought to those around him.

Rest peacefully, sweet boy. 💜

09/28/2026

Paris brought the ATP1A3 community together — and the science took center stage. 🇫🇷🧬

The 14th International Symposium on ATP1A3 Disorders brought researchers, clinicians and patient organizations from around the world together to share new research, exchange ideas and continue pushing our understanding of ATP1A3-related disorders forward.

For the AHC Foundation, being in these rooms matters.
We heard from experts working across many areas of ATP1A3 research, saw where the science is heading, and had the opportunity to bring the AHC family perspective into those conversations.

AHCF President Vicky Platt also took the stage to share how a small rare disease community can make a big impact through persistence, partnership and a strong patient voice.

And amid all that science, there were some pretty wonderful human moments too — including finally getting to spend time with Rupert of Rupert’s Rainbow. 🌈

Research is why we gather.
Our families are why we keep pushing.

We came home from Paris informed, connected and ready for what comes next. 💜

09/26/2026

💙 In Loving Memory of TJ Walker

It is with deep sadness that we share the passing of TJ Walker, who passed away on September 23, 2026, at the age of 34.

TJ was a beloved son, grandson, nephew and friend, whose special soul touched everyone fortunate enough to know him. He was accomplished in Martial Arts with a black belt and loved his loyal dog Marshal with all his heart.

Our hearts are with the Walker family and all who loved TJ during this unimaginable loss. On behalf of the entire AHC community, we extend our deepest condolences and hope they find comfort in the love that surrounds them and in the precious memories they will carry forever.

Rest peacefully, dear TJ. You will always be remembered. 💙

09/24/2026

𝗪𝗲'𝗿𝗲 𝗹𝗶𝘃𝗲!
It's not too late to join us!

𝗖𝗼𝘂𝗿𝗮𝗴𝗲 𝗶𝗻 𝗖𝗮𝗿𝗲 𝗮𝗻𝗱 𝗚𝗿𝗶𝗲𝗳
🎙️ Brad Thompson
🕖 Happening now!

https://tinyurl.com/bpawtw62

09/23/2026

𝗧𝗼𝗺𝗼𝗿𝗿𝗼𝘄'𝘀 𝘁𝗵𝗲 𝗻𝗶𝗴𝗵𝘁! 💚

Grief can take many forms — and for families caring for someone with AHC, it can sometimes be difficult to even name what we are feeling.

Join Brad Thompson tomorrow for a thoughtful discussion about 𝗖𝗼𝘂𝗿𝗮𝗴𝗲 𝗶𝗻 𝗖𝗮𝗿𝗲 𝗮𝗻𝗱 𝗚𝗿𝗶𝗲𝗳. It is never too early or too late to start this conversation.

📅 September 24
⏰ 7:00 PM EDT

𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝗻𝗼𝘄 — https://tinyurl.com/bpawtw62

09/21/2026

𝗪𝗵𝗮𝘁 𝗰𝗮𝗻 𝘆𝗼𝘂 𝘁𝗮𝗸𝗲 𝗮𝘄𝗮𝘆 𝗳𝗿𝗼𝗺 𝗖𝗼𝘂𝗿𝗮𝗴𝗲 𝗶𝗻 𝗖𝗮𝗿𝗲 𝗮𝗻𝗱 𝗚𝗿𝗶𝗲𝗳?

A better understanding of the different ways grief can show up in our lives. Practical strategies for protecting your own emotional health. And tools to help navigate the ongoing challenges of caregiving.

Brad Thompson, M.A., NCC, LPC-S, will guide this conversation with compassion, experience, and an understanding of the unique emotional weight caregivers can carry.

This isn't just a conversation about grief. It's also a conversation about 𝗵𝗼𝘄 𝘄𝗲 𝗰𝗼𝗻𝘁𝗶𝗻𝘂𝗲 𝘁𝗼 𝗰𝗮𝗿𝗲 𝗳𝗼𝗿 𝗼𝘂𝗿𝘀𝗲𝗹𝘃𝗲𝘀 𝘄𝗵𝗶𝗹𝗲 𝗰𝗮𝗿𝗶𝗻𝗴 𝗱𝗲𝗲𝗽𝗹𝘆 𝗳𝗼𝗿 𝘀𝗼𝗺𝗲𝗼𝗻𝗲 𝗲𝗹𝘀𝗲.

Join us this Thursday.

📅 September 24
⏰ 7:00 PM EDT

𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝗻𝗼𝘄 — https://tinyurl.com/bpawtw62

09/18/2026

🍋 Ben, older brother of Theo who has AHC, and his friends created a 𝗹𝗲𝗺𝗼𝗻𝗮𝗱𝗲 𝘀𝘁𝗮𝗻𝗱 this past Monday to raise funds for AHCF and American Cancer Society.

Friends, family and neighbors came together to show their support and gave generously.

𝗧𝗼𝗴𝗲𝘁𝗵𝗲𝗿, 𝘁𝗵𝗲 𝗯𝗼𝘆𝘀 𝗮𝗻𝗱 𝘁𝗵𝗲𝗶𝗿 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗵𝗲𝗹𝗽𝗲𝗱 𝗿𝗮𝗶𝘀𝗲 𝗺𝗼𝗿𝗲 𝘁𝗵𝗮𝗻 $𝟴𝟯𝟬!

All proceeds will be split between the AHCF and the American Cancer Society. We are one step closer to supporting research, better treatments, and ultimately a cure.

Thank you boys for your passion to improve the lives of these warriors! 💛

Address

2000 Town Center, Suite 1900
Southfield, MI
48075

Telephone

+13136637772

Website

http://www.ahckids.org/, http://twitter.com/#!/AHCkids, http://www.youtube.com/user/AHCPresident

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