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
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
💜 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
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
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
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
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
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
🫀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
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
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
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

How Your AHC Data Drives Research and Improves Care - Webinar 3/25
2026-03-25 19:00 - 21:00
Join us for an upcoming 𝗔𝗛𝗖 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 featuring 𝗗𝗿. 𝗡𝘂𝘁𝗮𝗻 𝗦𝗵𝗮𝗿𝗺𝗮 𝗳𝗿𝗼𝗺 𝗛𝗮𝗿𝘃𝗮𝗿𝗱 𝗨𝗻𝗶𝘃𝗲𝗿𝘀𝗶𝘁𝘆 𝗮𝗻𝗱 𝗠𝗮𝘀𝘀𝗮𝗰𝗵𝘂𝘀𝗲𝘁𝘁𝘀 𝗚𝗲𝗻𝗲𝗿𝗮𝗹 𝗛𝗼𝘀𝗽𝗶𝘁𝗮𝗹.
📅 March 25th
⏰ 7:00 PM EDT
Register Here: 🔗 https://tinyurl.com/ypdh3wua
Dr. Sharma will introduce a 𝗻𝗲𝘄 𝘁𝘄𝗼-𝘆𝗲𝗮𝗿 𝗔𝗛𝗖 𝘀𝘁𝘂𝗱𝘆 designed to better understand how AHC evolves from childhood through adulthood.
This first-of-its-kind study will bring together 𝗽𝗲𝗱𝗶𝗮𝘁𝗿𝗶𝗰 𝗮𝗻𝗱 𝗮𝗱𝘂𝗹𝘁 𝗺𝗼𝘃𝗲𝗺𝗲𝗻𝘁 𝗱𝗶𝘀𝗼𝗿𝗱𝗲𝗿 𝘀𝗽𝗲𝗰𝗶𝗮𝗹𝗶𝘀𝘁𝘀 to study the entire AHC community.
The research aims to:
• Understand how AHC changes over time, including during puberty
• Identify measurable indicators of disease severity
• Improve ICU and emergency care protocols for AHC patients
To reduce the travel burden for families, the study will offer 𝗺𝘂𝗹𝘁𝗶𝗽𝗹𝗲 𝗽𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝘁𝗶𝗼𝗻 𝗼𝗽𝘁𝗶𝗼𝗻𝘀, including:
• In-person visits at family meetings
• Regional appointments
• Telehealth visits
• Home collection kits
Come learn about this exciting opportunity and 𝗵𝗮𝘃𝗲 𝘆𝗼𝘂𝗿 𝗾𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 𝗮𝗻𝘀𝘄𝗲𝗿𝗲𝗱 𝗱𝗶𝗿𝗲𝗰𝘁𝗹𝘆 𝗯𝘆 𝗗𝗿. 𝗦𝗵𝗮𝗿𝗺𝗮.
📅 March 25th
⏰ 7:00 PM EDT
🔗 https://tinyurl.com/ypdh3wua

Live Q & A Webinar with Denise Potter, RDN - Ketogenic Therapy
2026-04-08 13:00 - 15:00
Bring your questions and join the conversation.
Date: April 8th
Time: 1:00 pm EDT
Register: https://tinyurl.com/bdex5x99

Join us for a special 𝗹𝗶𝘃𝗲 𝗤&𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘄𝗶𝘁𝗵 𝗗𝗲𝗻𝗶𝘀𝗲 𝗣𝗼𝘁𝘁𝗲𝗿, 𝗥𝗗𝗡, founder of 𝗔𝗱𝘃𝗮𝗻𝗰𝗲𝗱 𝗞𝗲𝘁𝗼𝗴𝗲𝗻𝗶𝗰 𝗧𝗵𝗲𝗿𝗮𝗽𝗶𝗲𝘀, who brings over 𝟯𝟯 𝘆𝗲𝗮𝗿𝘀 𝗼𝗳 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝗮𝘀 𝗮 𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱 𝗗𝗶𝗲𝘁𝗶𝘁𝗶𝗮𝗻 𝗡𝘂𝘁𝗿𝗶𝘁𝗶𝗼𝗻𝗶𝘀𝘁 𝗮𝗻𝗱 𝟭𝟳 𝘆𝗲𝗮𝗿𝘀 𝘀𝗽𝗲𝗰𝗶𝗮𝗹𝗶𝘇𝗶𝗻𝗴 𝗶𝗻 𝗸𝗲𝘁𝗼𝗴𝗲𝗻𝗶𝗰 𝗺𝗲𝘁𝗮𝗯𝗼𝗹𝗶𝗰 𝘁𝗵𝗲𝗿𝗮𝗽𝘆.
When epilepsy is part of AHC, families are often told to try medication after medication, but rarely offered ketogenic therapy early. Why wait? Join Denise Potter, dietitian and founder of Advanced Ketogenic Therapies, for this Q&A session exploring how ketogenic therapy works, why it’s often misunderstood, and how it may support not only seizure control but other neurologic symptoms seen in AHC.

Denise will help families better understand:

• How ketogenic therapy works
• Why it is often misunderstood or overlooked
• How it may support seizure control and other neurologic symptoms seen in AHC
• The role of 𝗻𝘂𝘁𝗿𝗶𝘁𝗶𝗼𝗻 𝗾𝘂𝗮𝗹𝗶𝘁𝘆 𝗮𝗻𝗱 𝘄𝗵𝗼𝗹𝗲 𝗳𝗼𝗼𝗱𝘀 in metabolic therapy
• How thoughtful nutrition planning can support 𝗴𝘂𝘁 𝗵𝗲𝗮𝗹𝘁𝗵 𝗮𝗻𝗱 𝗵𝗲𝗹𝗽 𝗮𝗱𝗱𝗿𝗲𝘀𝘀 𝗰𝗼𝗺𝗺𝗼𝗻 𝗰𝗼𝗻𝗰𝗲𝗿𝗻𝘀

Denise’s work focuses on helping individuals and families access 𝘀𝗮𝗳𝗲, 𝘀𝘁𝗿𝘂𝗰𝘁𝘂𝗿𝗲𝗱, 𝗮𝗻𝗱 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵-𝗶𝗻𝗳𝗼𝗿𝗺𝗲𝗱 𝗸𝗲𝘁𝗼𝗴𝗲𝗻𝗶𝗰 𝘁𝗵𝗲𝗿𝗮𝗽𝗶𝗲𝘀 with personalized guidance and compassionate care.

Bring your questions and join the conversation.

Date: April 8th
Time: 1:00 pm EDT
Register: https://tinyurl.com/bdex5x99

Denise Bio:

With over 33 years of experience as a Registered Dietitian Nutritionist, and 17 years dedicated to Ketogenic Metabolic Therapy, Denise has spent her career teaching, training, and supporting individuals and professionals worldwide. In recognition of her leadership in metabolic and brain health, she was named an inaugural recipient of the Metabolic Mind Award from the Baszucki Brain Research Fund. She brings a deeply client-centered approach to her work and has a special passion for helping underserved populations access therapeutic ketogenic interventions safely and effectively.
Advanced Ketogenic Therapies grew from Denise’s recognition that many people were being told to “try keto,” but few were given safe, structured, or research-informed guidance. She founded AKT to change that. Her vision was to create a place where clients could receive personalized plans, thoughtful monitoring, and compassionate support. She believes that when people are guided with clarity and care, meaningful and lasting change is possible.

Advanced Ketogenic Therapies

Parent University – Let’s Get Clear Together On Government Benefits
2026-04-16 12:00 - 13:00
In this in-depth session about government benefits, we will cover:

Can you ever know everything about the benefits available to you and your family?
How do you know if you have applied for everything possible? We’ll be talking about SSI, SSDI, DAC, Medicare, Medicaid, SNAP, and more.

When:
April 16, 2026
12:00 pm – 1:00 pm
Click Here to Register

RARE Advocate Development (RAD) Brain Workshop
2026-05-01 08:00 - 17:00
We’re excited to share that the AHC Foundation has been invited to attend the RAREAdvocate Development (RAD) Brain Workshop this May in Boston!

This three-day intensive, hosted by Global Genes, the Rare Epilepsy Network (REN), and Mahzi Therapeutics, brings together rare disease advocates who are actively accelerating research in their neurological conditions.

From drug development and clinical trial design to regulatory strategy, manufacturing, and even drug repurposing, this workshop is focused on building the knowledge and confidence needed to move therapies forward.

We’re honored to represent our community at this collaborative meeting at Alexion, AstraZeneca Rare Disease, and look forward to sharing key insights when we return.

Learn more about the RAD Brain Workshop: https://globalgenes.org/rare-advocate-development-rad…/

AHCF Family Circle - You're Invited - 5/13/26
2026-05-13 13:00 - 14:00
Join us for our next AHCF Family Circle on Wednesday, May 13th 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

AHCF Family Circle – You’re Invited – 5/13/26
2026-05-13 13:00 - 14:30

2026 Parent University - Vacations and Respite Ideas for the Whole Family
2026-05-14 13:00 - 14:00
In this exciting session about respite, we will cover:
Have you ever thought it is just not possible to have a vacation? Or maybe just some respite?
How does that fit into your life?
Where can you find resources that match the needs of your family?
Click Here To Register

What’s so Special about Special Needs Planning!
2026-05-20 19:00 - 21:00
Mary Anne Ehlert of Protected Tomorrows presents: What’s So Special about Special Needs Planning.
Webinar event: May 20th at 6:00 p.m. Central Time
Registration link:
https://us02web.zoom.us/webinar/register/WN_r_SXL-kTQ6W02_onrknsEQ
Join us for an enlightening presentation that includes:
An overview of the Protected Tomorrows Mission and an understanding of how we work with families to Construct a Framework for Future Care, Coordinate Family Communication and Transitions, as well as Navigate Legal and Financial Requirements. We will review the different steps needed for financial security, particularly for special needs families; review how the right resources make a difference in helping families coordinate care, and how Protected Tomorrows can help the AHF Family.
Mary Anne Ehlert is a financial professional and founder of Protected Tomorrows, a business driven to help
families plan a safe and fulfilling life for their loved ones with special needs. She is highly regarded as a
specialist in working with the growing number of families of individuals with disabilities and the elderly. Her
expertise is driven by her relationship with her sister, an individual with disabilities. She communicates her
knowledge at family and financial conferences; she also delivers important information to television and radio
audiences, appearing on such shows as WGN-AM’s “The Steve Cochran Show” and Chicago’s ABC7 News.
She has been featured in such publications and Internet sites as the Chicago Sun-Times, Bloomberg.com,
Investment News and Financial Advisor.
Ehlert has been a member of the Board of Directors of several organizations providing services to children and
adults with special needs including Vice-Chair, National Disability Institute in Washington DC, and Illinois
Special Olympics. She is currently a board member of the Special Olympics Illinois Foundation, Cornelia de
Lange Syndrome (CDLS) Foundation, Integrative Touch, Protected Tomorrows Charities, and the Advisory
Board of Tails for Life.
She speaks on financial planning and on the role of care giving, and completed her book, entitled “The Gift I
Was Given: The Journey of a Caregiver Through the Stages of What Now?, Why Me?, and Ah Ha!
Ehlert’s sister, Marcia, was born with cerebral palsy and inspired Mary Anne’s dedication to helping others
protect their family member’s future. She later became a long-term caregiver for both of her aging parents.
While coordinating the care, along with her other 4 adult siblings, she developed a unique (and entertaining)
perspective on how family members relate to each other in this care giving mode.

Family Circle is Going on Summer Break!
2026-06-09 15:30 - 2026-09-10 17:00
AHC families and caregivers,
Family Circle will be on summer break from June through August, and we look forward to gathering again in September!
We. Are. Here.
If you’re looking for connection, support, or resources during the summer months, please reach out to AHCF’s Family Support Team at heather@ahckids.org.
Wishing you a safe, relaxing, and joy-filled summer!

Protected Tomorrows Parent University - ABLE Account Webinar
2026-06-11 13:00 - 14:00
Protected Tomorrows Parent University is presenting a free webinar on June 11th. Everyone who has an interest in the Special Needs Community is invited. In this important session about ABLE Accounts, we will cover:
The basics of ABLE
How ABLE differs by state
How to stay out of trouble.
What is the best way to use this funding tool?
Click Here To Register https://us02web.zoom.us/webinar/register/WN_pcsTjmpJQVeFHVZqQwal5A#/registration

AHCF Webinar - Dr Mohamad Mikati
2026-06-18 19:00 - 20:30
“What We’ve Learned from the outcome study of 115 Individuals with AHC: Insights for Families and Future Treatments”
View Here – https://www.youtube.com/watch?v=k12e9nL-L48&t=228s
The Natural History Study of AHC which was published recently (https://onlinelibrary.wiley.com/doi/epdf/10.1002/cns3.70037) and was highlighted as the top article of the year in the North American Child Neurology Society, has major implications for the care of AHC champions and for anticipated clinical trials. This study highlights, among other things, many prognostic factors that help chart the clinical course of specific patients, that can help families know what to expect and thus better care for these champions.
Examples include the following:
1. Better understanding the factors that determine the trajectories of each patient depending on, not only, the gene mutation but also on their specific early pattern of development and severity of spells at around the age of one year and on the presence of epilepsy
2. The amelioration of plegia spells during the period of later childhood through mid-adulthood.
3. The potential detrimental effects of epilepsy on development and on life threatening events.
Implications on the therapies given to AHC champions include tailoring and individualizing the prescribed treatments/anticipatory guidance and being deliberate and proactive in the therapy of epilepsy.
Findings from this study will help in planning anticipated therapeutic trials including gene therapies in several ways, among them to make sure patients who receive such therapies are compared to untreated patients with similar anticipated clinical course trajectories as well as planning the timing of the interventions in these trials.
Mohamad A. Mikati MD, FAS, Davison Professor of Pediatrics, Professor of Neurobiology, Duke University who has received multiple awards and is listed by research.com as one of the ranked Best Scholar Neuroscientists nationally and worldwide (> 350 scientific articles, 55 are about AHC/ATP1A3).
He received his MD at the American University of Beirut then trained in Neurology and Neurophysiology at Harvard.
His basic science and clinical research concentrated on epilepsy and on Alternating Hemiplegia of Childhood (AHC). In AHC, he was the first to demonstrate, in 1992, familial occurrence of AHC, thus proving that it is a genetic disease.
He also was the first to develop an AHC-USA Registry at Harvard and to report, in 2000, based on that registry, on the totality of AHC manifestations and long-term outcome. Subsequently, he was one of 2 senior and corresponding authors, contributed equally, of the Nature Genetics article that, in 2012, demonstrated that AHC is caused by ATP1A3 mutations.
Then, in 2015 and 2018, he generated mouse models of the two most common AHC mutations, established that they faithfully reflect human AHC manifestations and characterized their neuronal electrophysiology.
He led the team that was the first to demonstrate that gene therapy increases survival and ameliorates several manifestations in AHC mice.
He also established, at Duke, the leading center for care and clinical research for patients with AHC in the USA and generated a series of publications (2015-2026) regarding the manifestations and therapies of AHC.
He co-founded, led and collaborated with other members of the International AHC Consortium (IAHCRC) on clinical studies of AHC including the international natural history study, in 2025.
He continues to pursue active clinical and basic research aiming at curing AHC.

Caregivers Compass Begins Soon - Register Now
2026-07-20 08:00 - 2026-08-12 17:00
Registration is now open for our Caregiver’s Compass, a free virtual course for parents and caregivers of children with complex health care needs.
Caregiving often means focusing on everyone else’s needs first. This course gives caregivers time to step back and learn ways to support their own well-being while continuing to care for someone they love.
Caregiver’s Compass is led by certified counselor Brad Thompson and meets once a week for four weeks. Participants can choose the session time that works best for their schedule.
Goals of the The Caregiver’s Compass

Equip participants with the tools to recognize and navigate recurring stress and grief with evidence-based strategies they can apply in everyday life.
Strengthen family and care-team communication to support stronger advocacy and reduce burnout.
Build sustainable, community-rooted caregiving support.

Available course times:
Mondays at 1:00 p.m. ET
July 20, July 27, August 3, August 10
Mondays at 8:00 p.m. ET
July 20, July 27, August 3, August 10
Tuesdays at 1:00 p.m. ET
July 21, July 28, August 4, August 11
Wednesdays at 9:00 a.m. ET
July 22, July 29, August 5, August 12

This is a space for caregivers who want support that feels useful, realistic, and respectful of what caregiving actually looks like.
If you or someone you know could benefit from this opportunity, we encourage you to register and share it with others in the child neurology community.

AHCF Webinar: What does your child's genetic test actually mean?
2026-07-28 19:00 - 21:00
Your Child’s AHC Genetic Results: What They Mean—and Why They Matter
📅 Tuesday, July 28
🕖 7:00 PM EDT https://accountingdepartment.zoom.us/meeting/register/-sVoMJcKSkGgMuvXrLIuAg
Many individuals with Alternating Hemiplegia of Childhood (AHC) have a change, or mutation, in the ATP1A3 gene—but understanding what those results mean can feel overwhelming.
Join us for a special webinar with Suzanne D. DeBrosse, MD, FACMG, as she helps families better understand the genetics behind AHC, what genetic testing can (and can’t) tell us, and why these results matter for your loved one, research, and the future of genetic therapies. Whether you’re newly diagnosed or have been part of the AHC community for years, this webinar will help make the science behind genetic testing more understandable.
About our speaker
Dr. Suzanne DeBrosse is a clinical geneticist at University Hospitals Cleveland Medical Center and Associate Professor at Case Western Reserve University. Board certified in Pediatrics, Child Neurology, and Clinical Genetics, she has served on the AHCF Medical Advisory Board since 2012 and has spent more than a decade caring for individuals with AHC while advancing research and education in the field.

Protected Tomorrows Parent University - Education: Back to SchoolTips
2026-08-13 13:00 - 14:00
Description – “School” can mean many things:
– If your child is young, what is an IEP?
– If your child is older, what can you expect to be available?
– Are there really appropriate school experiences for your child after high school?
Date & Time Aug 13, 2026 12:00 PM Central Time (US and Canada)
Webinar ID 824 7144 8908
Parent University Registration

14th ATP1A3 Symposium
2026-09-24 08:00 - 2026-09-26 17:00
The 14th International ATP1A3 Symposium, which brings together researchers, clinicians, families and associations from around the world around rare diseases linked to the ATP1A3 gene , is fast approaching. The French AHC Family Association (AFHA) is honoured and delighted to announce that the 14th ATP1A3 in disease Symposium will take place at the at the Pitié-Salpêtrière Hospital in PARIS, France.
Thursday, September 24, 2026, will be dedicated to a major meeting for associations and families affected by ATP1A3-related disorders, aiming to continue and enhance collaborative efforts among all our groups and families.

🎟️Tickets for the family reunion: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/reunion-internationale-des-familles-ahc
Friday, September 25, and Saturday, September 26, 2026, will bring together leading scientists, geneticists, physicians, professors, and researchers actively working on the ATP1A3 gene to review current knowledge and present key medical research advancements.

🎟️Symposium tickets: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/symposium-atp1a3-paris-2026

Download the Welcome letter by the 2026 Organizing Committee
These pathologies, including alternating hemiplegia (AHC) , remain largely unknown and require international scientific mobilization, which is why the symposium was created.
It takes place annually and has become a key moment for:
Presenting research advances 🔬
Sharing new therapeutic approaches 💊
Strengthening international collaborations 🤝
Giving a voice to families and associations involved on a daily basis 👩‍👧‍👦
Why is this event so important?
ATP1A3 diseases mainly affect children and cause severe symptoms: hemiplegic seizures, motor disorders, cognitive difficulties, dystonic episodes…
For families, each scientific advance represents a concrete hope.
The symposium allows for:
to advance the understanding of these complex diseases,
to accelerate research projects ,
to encourage the emergence of new therapeutic approaches ,
to increase the international visibility of these rare diseases.
📆September 24, 2026 – Family Reunion
September 25 & 26 – Symposium
📍 At the Pitié-Salpêtrière Hospital,
Edmond and Lily Safra Auditorium, Paris
83 Hospital Boulevard
75013 Paris – FRANCE
🎟️Symposium tickets: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/symposium-atp1a3-paris-2026
🎟️Tickets for the family reunion: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/reunion-internationale-des-familles-ahc

AHCF Family Meeting 2027 - Bigger in Texas. Stronger Together.
2027-06-23 08:00 - 2027-06-26 17:00
One year from now, we’ll be calling this place home. 💜
We’re excited to share the host hotel for the 2027 AHC Foundation Family Meeting!
🏨 Marriott CityPlace at Springwoods Village
📍 Houston, Texas
📅 June 23–26, 2027
Welcome to the AHC Foundation Family Meeting where the AHC community comes together—to learn from leading experts, help shape the future of AHC research, build lifelong friendships, and remind one another that no one walks this journey alone.
Whether you’re new to the AHC community or have been with us for years, there’s a place for you here. We can’t wait to welcome you to Houston.
Hotel reservation information will be shared as soon as it’s available. Until then…save the date!
💜 Big Hearts. Strong Bonds. Together in Texas. 📍 Houston, Texas | June 2027
