AHCF

2026 Parent University - Vacations and Respite Ideas for the Whole Family
2026-05-14 13:00 - 14:00 (America/New_York)
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

𝗪𝗵𝘆 𝗶𝘀 𝗺𝘆 𝗰𝗵𝗶𝗹𝗱 𝗯𝗲𝗵𝗮𝘃𝗶𝗻𝗴 𝘁𝗵𝗶𝘀 𝘄𝗮𝘆?
2026-08-13 19:00 - 20:30
📅 𝗔𝘂𝗴𝘂𝘀𝘁 𝟭𝟯𝘁𝗵 🕖 𝟳:𝟬𝟬 𝗽𝗺 𝗘𝗗𝗧
Register Here – https://tinyurl.com/m7dzhcd4
𝗪𝗵𝘆 𝗶𝘀 𝗺𝘆 𝗰𝗵𝗶𝗹𝗱 𝗯𝗲𝗵𝗮𝘃𝗶𝗻𝗴 𝘁𝗵𝗶𝘀 𝘄𝗮𝘆?
It’s a question many AHC parents have asked themselves.
Behavior can be one of the most confusing and emotionally exhausting parts of living with AHC. It can change over time, look different from one child to the next, and often leave families searching for answers.
Whether you’re navigating behavioral challenges today or simply want to better understand what may lie ahead, this is a webinar you won’t want to miss.
Join 𝗔𝗹𝗶𝗰𝗲 𝗕𝗲𝗹𝗴𝗿𝗮𝗱𝗲-𝗠𝗼𝘀𝘀, 𝗠𝗦𝗘𝗱., 𝗟𝗖𝗣𝗖, 𝗕𝗖𝗕𝗔, a nationally recognized board-certified behavior analyst with decades of experience, as she shares practical strategies, real-world tools, and compassionate insights to help families better understand the why behind behavior—and how to respond with greater confidence.
Understanding behavior is one of the greatest gifts you can give your child—and yourself.
📅 𝗔𝘂𝗴𝘂𝘀𝘁 𝟭𝟯𝘁𝗵
🕖 𝟳:𝟬𝟬 𝗽𝗺 𝗘𝗗𝗧
Register Here – https://tinyurl.com/m7dzhcd4

Parent University Class 9: | The Many Faces of Protection
2026-09-10 13:00 - 14:00
In this thoughtful session about protection, we will cover:
How do you best protect what you’ve built for now and for the future?
Do you have the right kind of protection?
What if you don’t know what you don’t know?
What are the types of protection you should consider?
What are the insurance as well as titling opportunities?
Click Here To Register

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
In June of 2027, 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
