Happy Birthday Daxton!
2023-12-24
December 24, 2023
Daxton Douglas turns 3 today, join us in wishing her a happy birthday and give the gift of hope for an AHC future by donating to AHCF.

Happy Birthday Joey!
2023-12-25
December 25, 2023
Joey Hawk turns 11 today, join us in wishing him a happy birthday and give the gift of hope for an AHC free future by donating to AHCF.

Valentine's Exchange 2024
2024-01-31
Hello AHC families! It’s time for the AHC Valentine’s Day card exchange. This started as a way to keep our children connected between family meetings (before social media). All ages can participate! Each child/adult sends a card to all participating. Some send a photo card, handmade card, stickers, or drawing/coloring. To participate, email your child’s name, address, and age to heather@ahckids.org by January 31st. A list of all participating will be emailed out to you by February 2nd.

Warriors for Kathryn
2024-02-02 17:00 - 23:00 (America/Indiana/Indianapolis)
FRIDAY FEBRUARY 2,2024
5PM
Expo Hall – 2691 N. Park Rd. Connersville, IN
Help support a worthy cause through Warriors for Kathryn at Expo Hall in Connersville! Follow the event page on Facebook at https://fb.me/e/3F5hfAh9p for more information on Wine Bingo, Texas Hold’em, Dinner, Basket Raffle, Quilt Raffle, and more!

Warriors for Kathryn Quilt Raffle
2024-02-02 19:00 - 19:30 UTC
Kaleidoscope of Hope is the name of this year’s quilt to be raffled off at the Warriors for Kathryn event on February 2, 2024, in Cornersville, Indiana.

Warriors for Kathryn 2024 Quilt Raffle Information:
Quilting tradition asks for a name to be selected for a quilt. “Kaleidoscope of Hope” is the name given to this year’s
Warriors for Kathryn 2024 quilt with all proceeds going directly to AHC research.

85” by 85” – King or Queen or Full (King coverlet with 6.5 in drop, Queen Bedspread with 12.5 in drop, Full Bedspread with 15.5 in drop)

The quilt top is a traditionally pieced (by machine) from a Sue Garman pattern called Stars for a New Day. There are a total of 4,050 individual pieces in the quilt top. It uses a mix of batiks and prints- 100% cotton. The backing of the quilt is made from Moda 100% cotton and the double batting of Quilter’s Dream

Wool (washable and hypoallergenic) over Dream Poly, both washable and hypoallergenic. ……made by Christine Marszalek

Ticket Information:
• Online Raffle Ticket Sales will close at 1pm Eastern Time on the drawing day.
• Tickets will be available at the event until 6:45pm Eastern Time.
• Tickets cost $5 per chance.
• Buy 4 tickets for $20 and get one free.
• Each $20 gets you 5 tickets. (10 for $40, 15 for $60, 20 for $80….)

To enter the raffle and learn more about AHC, go to:
https://ahckids.app.neoncrm.com/eventReg.jsp?event=72&

Empowered Parenting: Thriving as a Single Parent Raising a Rare Disease Child
2024-06-27 19:00 - 20:05 (Asia/Dubai)
The National Organization for Rare Disorders (NORD) invites you to join us for a comprehensive, supportive, and closed-door discussion about raising a rare disease child or children as a single parent.
Date: Thursday, June 27, 2024
Time: 7:00 p.m. – 8:05 p.m. ET
Location: Virtual via Zoom
You will hear from single rare parents about tools, resources, and information they have utilized to navigate the unique challenges of raising their kids. This session will offer strategies to help both you and your child thrive. Plus, you will get to connect with other parents facing similar journeys and leave feeling empowered and equipped to tackle the challenges of raising a child with a rare disease with confidence and resilience.
Register for this Community Conversation here.
We encourage you to forward this invitation to others who might benefit from attending!

Join the Freedom Run on July 6
2024-07-06 | Edinburg Municipal Park, 714 S. Raul Longoria, Edinburg, TX, 78504, United States
A 4th of July run for a cure benefiting Alternating Hemiplegia of Childhood Foundation.

Support Group for AHC, Monthly Family Circle
2024-09-28 14:00 - 15:00 (America/New_York)
Join us for our next AHCF Family Circle on Saturday, September 28th at 11am PST/ 1pm CST/ 2pm EST. This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey! If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.

Join Zoom Meeting: https://us02web.zoom.us/j/85227963024…

Sign up for text message reminders for AHCF Family Circle at: https://www.remind.com/join/familyahc?utm_medium=ios

Family Fun in Cincinnati: A Perfect Getaway!
2025-03-31 08:00 - 17:00 (America/New_York)
Looking for the perfect family vacation? Cincinnati is a hidden gem packed with unforgettable experiences for kids and parents alike!
Explore & Learn – From hands-on exhibits at the Cincinnati Museum Center to the wonders of the Newport Aquarium, every day is an adventure!
Outdoor Fun – Take in the stunning riverfront at Smale Park, ride the Carol Ann’s Carousel, or watch the world go by on a BB Riverboat Cruise. Kid-Approved Eats – Enjoy local favorites like Skyline Chili or grab a sweet treat at Graeter’s Ice Cream! Sports & Entertainment – Catch a Reds game, cheer on FC Cincinnati, or explore the city’s vibrant arts scene. No matter what your family loves, Cincinnati is full of adventure, discovery, and joy! Have you taken a family trip here? Tell us your favorite Cincinnati memories! www.ahckids.org#AHCFamilyMeeting #KidFriendlyCincinnati #ExploreOhio
See less

Time is Running Out! Family Meeting 2025
2025-06-19 08:00 - 2025-06-21 17:00 (America/New_York)
Last chance! Don’t miss the opportunity to meet with the expert AHC community of providers and parents on June 19, 2025. We have researchers, treating physicians, family support and more all speaking on the latest information, and helpful tips and tricks, regarding AHC. Please don’t miss this opportunity to spend time with other AHC parents, and have your kids play or simply hang out with other AHC kids and adults. Moreover, it’s the AHC Foundation’s 30th Anniversary and we are going all out to make this the best Family Meeting yet! Join us!
Meeting Info & Registration Link

ATP1A3 Symposium - September 15 & 16
2025-09-15 - 2025-09-16
The 13th ATP1A3 in Disease Symposium will take place (virtually) on 15 and 16 September 2025 in Cairns, Australia, in conjunction with the 17th International Meeting on P-Type ATPases in Health & Disease

The Program of the 13th Symposium is set up to allow speakers and participants from Australia and Asia Pacific , but also from all other parts of the world to join live or see the recorded sessions soon after the end of the streaming. There are two joint sessions with the 17th P-Type ATPase meeting that will be live-streamed from Cairns (15 Sep, 18:00-19:30 AEST and 16 Sep, 18:00-20:00 AEST). Here, the time schedule of the Symposium. Warm welcome to delegates joining us virtually for the Symposium alone, and to those joining in-person in Cairns, Australia!Registration
To participate in the 13th Symposium, you need to register on the site of the Conference https://iupab.org/atpase-conference-registration/. Early bird registration deadline is 25 July 2025.

Updated Program NEW
Invited Speakers NEW
If you have any issues or questions regarding registration and abstract submission, please email ronald.clarke@sydney.edu.au or melody.li@florey.edu.au

Dystonia Webinar September 24
2025-09-24 12:00 - 13:00 (America/Chicago)
Registration is Now Open for the Dr. Nutan Sharma Webinar!
We are thrilled to announce that registration is now open for our upcoming webinar with Dr. Nutan Sharma, a world-renowned leader in movement disorders.
✨ The webinar is free to attend, but registration is required. When you register, you will immediately receive a confirmation email with the link to join. 👉 https://tinyurl.com/pkjk87pu
Don’t miss this opportunity to learn directly from one of the foremost experts in the field!
#dystoniaawareness #AHCF #CareCantWait

AHCF Family Circle
2025-10-08 13:00 - 14:00 (America/New_York)
You’re Invited!
Join us for our next AHCF Family Circle on Wednesday, October 8th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily

Parent University - Sibling Panel - The Future without us
2025-10-09 13:00 - 14:00 (America/New_York)
Parent University: Sibling Panel – The Future Without UsMany of us hope that siblings will one day step into our shoes — but how do they really feel about that? What do they need to know, and when is the right time to share it?Join Protected Tomorrows’ Parent University on October 9th, 12:00–1:00 PM CT for a powerful Sibling Panel where brothers and sisters share their real experiences, insights, and hopes for the future. Hosted by Mary Anne Ehlert, Partner, Protected Tomorrows October 9, 2025 | 12–1 PM CT Register here: https://protectedtomorrows.com/parent-university…/Let’s start the conversation that helps bring peace of mind — for parents and siblings alike.

NORD Breakthrough Summit
2025-10-19 08:00 - 2025-10-21 17:00 (America/New_York)
Check out this information-filled event!

"Can I Have Joy/Peace Without Being Naive or In Denial?"
2025-10-22 13:00 - 14:00 (America/New_York)
Parenting a child with AHC means facing moments of stress, resilience, purpose, and anticipatory grief.
Join counselor Brad Thompson, MA, LPC-S for a heartfelt session on finding joy and peace — even through naivety and denial.
Practical tools. Real talk. Hope you can hold on to.
Wednesday, October 22
12:00 – 1:00 PM CST (40-minute presentation + 20-minute live Q&A)
Hosted by the Alternating Hemiplegia of Childhood Foundation
Open to all AHC families and caregivers.
Register Here

Season of Giving - Help Ignite the Start of AHC Research Projects in 2026
2025-11-02 - 2025-12-31
Our year-end campaign is here — a season of hope, movement, and possibility for every individual living with Alternating Hemiplegia of Childhood.
You Can Help Light the Path in Three ways:

Send a letter to family members, friends, colleagues, or school/church members – asking for help in lighting the path – then ask them to share with their families and friends. Here are three template letters to use:

Long version – tell your families story
Medium version – great for personal emails and social posts
Short version – perfect for text messages and quick emails

Join the “Light the Path” social media Giving campaign and then please share with your network https://www.facebook.com/AHCKids
Donate yourself to help keep the momentum and exciting progress going https://ahckids.app.neoncrm.com/forms/ahcf-donation-form Or mail a check to AHCF, 2000 Town Center, Suite 1900, Southfield, Mi 48075

Dear Friend of the AHC Foundation,
As 2025 draws to a close, we reflect on the incredible progress made during our 30th anniversary year—and the many families who continue to face the daily challenges of Alternating Hemiplegia of Childhood (AHC). Every step forward in research brings renewed hope for better treatments, improved quality of life, and, ultimately, a cure.
But hope needs fuel. It needs people like you.
This holiday season, we invite you to join us in a powerful movement to Light the Path for AHC Research in 2026. Your year-end gift will illuminate the road ahead for groundbreaking studies, innovative collaborations, and the accelerating search for answers that every AHC family deserves. Three of the projects needing funding in 2026 are:
Duke Univ., Phase 3 Gene Therapy project for D801N & E815K mutations.
Leiden Univ., 5-year joint international study on sleep and Flunarizine.
NIH Project – Using an AHC mouse model, establish the impact of the D801N variant on the brain and cell survival
Together, we can turn scientific potential into real progress. Together, we can bring light to those navigating the uncertainty of this rare disorder.
We are reaching out to ask for your support in raising funds for the AHC Foundation, an organization dedicated to advancing research, improving treatments, and providing hope for families like ours. Every donation, no matter the amount, helps fund scientific studies, medical care advancements, and community resources that bring us closer to finding better therapies—and, one day, a cure.
Please make your tax-deductible contribution before December 31 to help us start 2026 with strength, momentum, and determination.
From all of us at the AHC Foundation, thank you for being the light that guides our mission forward. We wish you peace, health, and joy in the year ahead.
With deep gratitude,
Victoria Platt
President
AHC Foundation

Light the Path for AHC Research in 2026!
2025-11-04 - 2025-12-31
Dear Friend of the AHC Foundation,
As 2025 draws to a close, we reflect on the incredible progress made during our 30th anniversary year—and the many families who continue to face the daily challenges of Alternating Hemiplegia of Childhood (AHC). Every step forward in research brings renewed hope for better treatments, improved quality of life, and, ultimately, a cure.
But hope needs fuel. It needs people like you. Donate Here
This holiday season, we invite you to join us in a powerful movement to Light the Path for AHC Research in 2026. Your year-end gift will illuminate the road ahead for groundbreaking studies, innovative collaborations, and the accelerating search for answers that every AHC family deserves. Three of the projects needing funding in 2026 are:

Duke Univ., Phase 3 Gene Therapy project for D801N & E815K mutations.
Leiden Univ., 5-year joint international study on sleep and Flunarizine.
NIH Project – Using an AHC mouse model, establish the impact of the D801N variant on the brain and cell survival

Together, we can turn scientific potential into real progress. Together, we can bring light to those navigating the uncertainty of this rare disorder.
We are reaching out to ask for your support in raising funds for the AHC Foundation, an organization dedicated to advancing research, improving treatments, and providing hope for families like ours. Every donation, no matter the amount, helps fund scientific studies, medical care advancements, and community resources that bring us closer to finding better therapies—and, one day, a cure.
Please make your tax-deductible contribution before December 31 to help us start 2026 with strength, momentum, and determination. Checks can be mailed to our above address, or online donations can be made at www.ahckids.org.
From all of us at the AHC Foundation, thank you for being the light that guides our mission forward. We wish you peace, health, and joy in the year ahead.
With deep gratitude,
Victoria Platt
President
AHC Foundation

Hands of Hope for AHC - Add Your Photo
2025-11-06 08:00 - 2025-12-21 17:00 (America/New_York)
It starts with our hands — and our hearts.

For the first time, The AHC Foundation, Cure AHC, and AHC Europe are joining together in one global movement — Hands of Hope — to show the world what hope looks like when we hold it together.

Now, it’s your turn:

What hands uplift you and your family on your AHC journey?

The hands that comfort, that create, that heal, that bring joy.

Take a photo of those hands in action — siblings, parents, friends, doctors, teachers, therapists, researchers — anyone who makes a difference.

Then, click the link below to upload your photo, share who they are, what they do, and why it matters.

https://forms.gle/ECZE17YLmjomXmpH8

Every submission will be shared across our social media channels — together creating a global mosaic of love, strength, and hope.

Built by our community, for our community.

Together, we hold the future.

#HandsOfHope #TogetherWeHoldTheFuture #AHCCommunity

AHCF Family Circle
2025-11-12 13:00 - 14:00 (America/New_York)
You’re Invited!
Join us for our next AHCF Family Circle on Wednesday, November 12th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily

“AHC and Epilepsy, Clarity and Confusion”
2025-11-19 13:00 - 14:00 (America/New_York)
💜 Join us for a live webinar Wednesday the 19th @ 1:pm EST. Dr. Kevin Ess, a leading neurologist in Epilepsy and Alternating Hemiplegia of Childhood (AHC) will share insights from the front lines of research and care — what’s next for families and the path to better treatments, then answer your questions!
Dr. Kevin C. Ess’s research integrates molecular neuroscience, human stem cell modeling, and clinical neurogenetics to elucidate mechanisms underlying developmental and epileptic encephalopathies, with a major focus on Alternating Hemiplegia of Childhood (AHC), ATP1A3-related disorders, and tuberous sclerosis complex (TSC). His laboratory has studied how pathogenic ATP1A3 mutations alter neuronal excitability using patient-derived iPSC models, contributing pivotal evidence of impaired Na⁺/K⁺-ATPase function and developing translational platforms for therapeutic discovery.
Clinically, he is a pediatric epileptologist who founded and directs comprehensive rare disease programs, including the AHC and TSC Clinics at Vanderbilt and Colorado Children’s Hospital, and serves on the Medical Advisory Board of the AHC Foundation, linking mechanistic insights to patient care through precision diagnostics and targeted management of neurogenetic disorders.
Registration Link

AHCF Family Circle - You're Invited!
2025-12-10 13:00 - 14:00 (America/New_York)
Join us for our next AHCF Family Circle on Wednesday, December 10th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily

AHC Valentine’s Day Card Exchange
2026-01-13 08:00 - 2026-01-30 17:00 (America/New_York)
Hello AHC families! It’s time for the AHC Valentine’s Day card exchange. This tradition began as a way to keep our children connected between family meetings, back before social media. Everyone is welcome to join, regardless of age! Each participant sends a card to all others—some choose photo cards, handmade creations, stickers, or drawings and coloring. To join, email your child’s name, address, and age to heather@ahckids.org by January 30th. A list of all participating will be emailed out to you by February 2nd.

AHCF Family Circle - You're Invited - 1/14/26
2026-01-14 13:00 - 14:00 (America/New_York)
Join us for our next AHCF Family Circle on Wednesday, January 14th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily

AHCF Apparel Pop-Up Store is Open!
2026-02-02 12:00 - 2026-02-23 00:00 (America/New_York)
You asked—and we’re excited to say it’s back 💙
Our apparel store is officially OPEN as a limited-time pop-up, launched to honor the meaningful days between International AHC Day and Rare Disease Day.
This collection is more than apparel. It’s about visibility, connection, and proudly supporting the AHC community. Many of these designs are fan favorites, brought back by popular demand, and available now through February 23.
Whether you’re wearing your support, sparking conversations, or standing with rare families everywhere—every purchase helps make an impact.
🛍️ Shop the pop-up before it closes on February 23
💙 Wear your support for rare
✨ Celebrate awareness, together

Shop here:

https://ahcf2026.itemorder.com/shop/home/

Parent University - Estate Planning
2026-02-12 13:00 - 14:00 (America/New_York)
All about estate planning 📄
Join Protected Tomorrows’ Parent University Class 2 for an informational session breaking down the different components of estate planning. In this class, we will discuss:
➡️ What are the components
➡️ How to find the right attorney
➡️ What needs to be updated and when
📅 February 12, 2026
⏰ 12 – 1pm CDT
💻 Zoom Webinar
🔗Register TODAY: https://protectedtomorrows.com/…/2026-parent…/
Even if you cannot attend the webinar, register to receive an email with a link to watch the recording in the following week.

🫀 Heart 2 Heart Webinar: Cardiac Care & AHC
2026-02-25 18:00 - 19:00 (America/New_York)
🫀Join AHCF for a heart-to-heart conversation with Dr. Andrew Landstrom, focused on the unique cardiac concerns faced by individuals living with Alternating Hemiplegia of Childhood.

Wednesday, February 25 @ 6:00 PM EST
Please click the link below to register for the event:
https://tinyurl.com/5863hv3z
Registration is required. All registrants will receive a confirmation email with the Zoom link.

This accessible webinar is designed for patients, families, and caregivers seeking clear, practical guidance and trusted insight.
During this webinar, participants will:
Learn about common cardiac concerns associated with AHC
Gain insight into cardiac evaluations and ongoing monitoring
Better understand what symptoms to watch for and what questions to ask
Participate in a live Q&A with Dr. Landstrom

Dr. Andrew Landstrom — a member of the 𝗔𝗛𝗖𝗙 𝗠𝗲𝗱𝗶𝗰𝗮𝗹 𝗔𝗱𝘃𝗶𝘀𝗼𝗿𝘆 𝗕𝗼𝗮𝗿𝗱— has been appointed 𝗜𝗻𝗮𝘂𝗴𝘂𝗿𝗮𝗹 𝗗𝗶𝗿𝗲𝗰𝘁𝗼𝗿 𝗼𝗳 𝗧𝗿𝗮𝗻𝘀𝗹𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 at 𝗖𝗵𝗶𝗹𝗱𝗿𝗲𝗻’𝘀 𝗛𝗼𝘀𝗽𝗶𝘁𝗮𝗹 𝗼𝗳 𝗣𝗵𝗶𝗹𝗮𝗱𝗲𝗹𝗽𝗵𝗶𝗮 (𝗖𝗛𝗢𝗣)’𝘀 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗜𝗻𝘀𝘁𝗶𝘁𝘂𝘁𝗲, where he is launching a new Center for Heritable Arrhythmias.
This new role reflects his continued commitment to advancing care for individuals with genetic arrhythmia syndromes, including those impacted by 𝗔𝗛𝗖 𝗮𝗻𝗱 𝗔𝗧𝗣𝟭𝗔𝟯 𝘃𝗮𝗿𝗶𝗮𝗻𝘁𝘀.

AHCF Family Circle - You're Invited - 3/11/26
2026-03-11 13:00 - 14:00 (America/New_York)
Join us for our next AHCF Family Circle on Wednesday, March 11th at 10am PST/ 12pm CST/ 1pm EST.
This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey!
If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.
Join Zoom Meeting: https://us02web.zoom.us/j/85227963024
Need a Reminder?
Sign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/familyahc

Parent University - Good Debt vs Bad Debt in Special Needs Trust
2026-03-12 12:00 - 13:00 (America/New_York)
Demystifying debt 💵
Join Protected Tomorrows’ Parent University Class 3 for a candid conversation regarding debt. In this class, we will discuss:
➡️Is there really such a thing as good debt?
➡️ When should you pay down debt?
➡️ Is there a creative way to use debt to fund a special needs trust?
📅 March 12, 2026
⏰ 12 – 1pm CDT
💻 Zoom Webinar
🔗Register TODAY: https://protectedtomorrows.com/…/parent-university…/
Even if you cannot attend the webinar, register to receive an email with a link to watch the recording in the following week.

The Caregiver’s Compass Training
2026-03-15 08:00 - 17:00 (America/New_York)
The Caregiver’s Compass is a free, four-week virtual course designed for parents and caregivers who want practical tools and meaningful connection.
Throughout this interactive series, caregivers will:
• Learn strategies for managing stress
• Strengthen communication skills
• Build tools to support mental wellbeing
• Connect in a supportive, community-centered space
Each live session is guided by licensed therapist Brad Thompson, offering expert insight in a compassionate and welcoming environment.
🗓 Register by March 15
🔗 Sign up here:
https://www.surveymonkey.com/r/CaregiversCompass
For more information:
https://tinyurl.com/3w3rkaz6
