KCNT1 Epilepsy Foundation

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KCNT1 Epilepsy Foundation

U.S.-based foundation serving the global KCNT1 community. Driving science, connecting families, shaping trials. www.KCNT1Epilepsy.org

06/07/2026

In 2024, Abigail, Heather, and Brian rode for the KCNT1 community to help fund research and bring hope to families around the world.

Now it's time to do it again!

Donate to Team KCNT1 and support Roman's Riders as they raise funds and awareness for KCNT1 research, here: https://loom.ly/_OvQ4zY

Every mile matters. Every dollar matters. Every family matters.

06/05/2026

Looking Back ⏮️
As we prepare for another year of the Million Dollar Bike Ride, we are reflecting on the moments, miles, and memories over the years.

Each MDBR has been powered by families, friends, and supporters coming together for KCNT1 research! We are grateful for how far we’ve come — and hopeful for what’s ahead.

✨ Be part of the momentum—
Donate to Team KCNT1 and Roman's Riders here:

➡️ Help us achieve another year of progress: https://loom.ly/Ia2-rNg

06/04/2026

Thanks to the incredible support of our community, funds raised through the Million Dollar Bike Ride have helped support KCNT1 research aimed at better understanding and treating this rare epilepsy.

Help contribute to meaningful research today!
➡️ Donate to Team KCNT1 & Roman's Riders Here: https://loom.ly/qOG3XjI

06/03/2026

📅 June Events with the KCNT1 Epilepsy Foundation

We have a full month of opportunities to connect, learn, and support one another. Whether you're looking to meet other families, learn more about emerging therapies, or join us in raising funds for research, we have something in store for you!

💜 June 13 – Million Dollar Bike Ride
Cheer on Roman's Riders in Roman's 4th MDBR. Donate to Team KCNT1 and Roman's Riders here: https://loom.ly/_OvQ4zY

💜 June 14 – Bereaved Parent Gathering, 8:00 PM EST
A dedicated space for bereaved parents to connect with others who understand this unique journey, hosted by Megan Murray. Register Here: https://loom.ly/heKLPI0

💜 June 16 – Understanding Mosaicism Webinar, 12:00 PM EST
Learn about mosaicism, what it means, and how it can impact families affected by KCNT1. Register Here: https://loom.ly/WnltgCM

💜 June 23 – Parent Hang Out, 7:00 PM EST
Join us for a casual evening of conversation, connection, and support with other KCNT1 parents, hosted by Megan Wright. Register Here: https://loom.ly/Qok75uk

💜 June 30 – Understanding A*Os & Informed Consent, 4:30 PM EST
In partnership with Dee-P Connections, this educational session will explore antisense oligonucleotide (A*O) therapies and the informed consent process for clinical research, featuring Dr. Olivia Kim-McManus and a parent panel. Register Here: https://loom.ly/UTr5BUY

We hope to see you this month!

06/02/2026

Actio Biosciences has announced that participant dosing is underway in its investigational KCNT1 therapy program and has also launched a new Expanded Access Program (EAP) for certain eligible patients under age 1, who are outside of the clinical trial setting.

Expanded Access Programs are designed to allow treating physicians to request access to investigational therapies for specific patients when certain criteria are met. Access requests are typically initiated through the treating physician and may be limited based on program requirements, regulatory considerations, and available capacity.

Additional information about the program, eligibility, and physician referral process is available through the sponsor: https://actiobiosciences.com/expanded-access-policy/

Milestones like this reflect continued momentum in therapeutic research for KCNT1-related disorders and the ongoing work of researchers, clinicians, families, advocates, and industry partners working to advance potential therapies.

05/30/2026

🎉 Happy 5th Birthday, Mackenzie! 🎉

Mackenzie loves snuggles, music, and swinging — all the simple moments that bring her comfort and joy. 🎶✨

We hope her birthday is filled with love, laughter, cuddles, and many happy moments with the people who love her most. Please join us in wishing Mackenzie the happiest birthday yet! 🎂

If you’d like to honor Mackenzie and support children living with KCNT1 epilepsy, you can donate here: https://givebutter.com/Birthdays4KCNT1Kids

05/28/2026

Lundbeck is hosting a 1-hour, virtual webinar for families and caregivers navigating severe and rare developmental epilepsies—often referred to as Developmental and Epileptic Encephalopathy (DEE).

🗓️ Monday, June 1st
⏰ 5:30 PM PT | 6:30 PM MT | 7:30 PM CT | 8:30 PM ET

This session will provide information about DEE and Lundbeck’s ongoing clinical research efforts in this space, including:
* An overview of DEE
* Overview of ongoing, actively enrolling Phase 3 clinical studies
* Responses to frequently asked questions

For more information about this event, please reach out to [email protected].

Register 👉 https://zoom.us/.../7617769791355/WN_ceq3_KCVTW6qhuqCkhQmxQ

05/26/2026

We ride for them 💜

This condition brings daily challenges that no family should have to face, and we ride to help change that reality by accelerating treatments, expanding understanding, and empowering families.

Every mile, every donation, and every participant helps move us closer to better treatments and a brighter future.

➡️ Donate to KCNT1 Team Roman's Riders: https://charity.pledgeit.org/f/d0wnal8ecz

05/25/2026

🎉 Happy 4th Birthday, Matias! 🎉

Matias loves ice cream, listening to music, and making sure all the attention is on him — just the way it should be! 🍦🎶✨ His family shares that they especially love his laugh and smile, and that he is such a sweet boy.

We hope Matias has a birthday filled with love, laughter, music, and plenty of special moments. Please join us in wishing him the happiest birthday yet! 🎂

If you’d like to honor Matias and support children living with KCNT1 epilepsy, you can donate here: https://givebutter.com/Birthdays4KCNT1Kids

05/24/2026

🎉 Happy 18th Birthday, Andra! 🎉

Today we are celebrating Andra as she turns 18 years old — such a special milestone. 💜

Andra loves music and being outdoors, and she finds comfort in familiar voices, gentle touch, and calm moments. Her beautiful smile brightens the days of everyone around her. 🌿🎶

We hope Andra’s birthday is filled with love, peaceful moments, and the people who know and cherish her best. Please join us in wishing her the happiest 18th birthday yet! 🎂

If you’d like to honor Andra and support children living with KCNT1 epilepsy, you can donate here: https://givebutter.com/Birthdays4KCNT1Kids

Address

32531 N Scottsdale Road, Ste 105/530
Scottsdale, AZ
85266

Telephone

+16037461330

Website

https://kcnt1epilepsy.org/, https://kcnt1epilepsy.org/donate

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