Bereaved Caregiver Meetup
KCNT1 Bereaved Caregiver Meetup 5/22/24 8pm Eastern. Registration required.
Dad's Monthly Meetup
Join KCNT1 dads for some casual conversation. Pre-registration is required. https://us02web.zoom.us/meeting/register/tZUkceCrqz8uEtVEazfuwkvS6fh_rjTX9aat
Research Roundtable
Register to meet with researchers, clinicians and industry representatives with KCNT1 programs. Be part of the solution, nd bring hope to hundreds of families around the world.
Million Dollar Bike Ride
Join our awesome families at this fun-filled event with 30 rare disease groups! Form a virtual team, ride or donate!
Sibling Circle
KCNT1 sibling circle. A space for siblings of KCNT1 warriors to meet and make new friends. Moderated by VIP-Sibling trainer, Jess Kruger.
EPI event
Foundation co-founder Dr Justin West returns to New York as the Keynote Speaker for the EPI organization, a longstanding organization providing personalized care, education, training, advocacy, and support solutions to meet the needs of people with developmental disabilities, epilepsy, and brain injury.
World Orphan Drug Conference
The World Orphan Drug Congress brings together leading pharmaceutical and biotech companies, government and regulatory authorities, patient advocacy groups, payers, investors and solution providers. The conference is a place to meet and brainstorm ways to advance orphan drug development and improve access to life-saving therapies.
Sibling Circle
KCNT1 sibling circle. A space for siblings of KCNT1 warriors to meet and make new friends. Moderated by VIP-Sibling trainer, Jess Kruger.
Lacrosse Charity Game
Chatfield Chargers Boys Lacrosse team honor their coach and the KCNT1 Epilepsy Foundation with a charity game in Littleton, CO. Every dollar donated makes a difference! Text the word “charly” to 53-555 to make a donation.
Purple Day
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.
Sibling Circle
Meet the KCNT1 warrior Siblings in this initial meet-and-greet, Sibling Circle! Registration is required. Prepare by ordering your free VIP Sibling kit and purchase a t-shirt from our Bonfire shop!
KCNT1 Dads Meetup (Monthly)
Calling all KCNT1 dads! Hit pause on the remote control this Sunday and drop in to an all-guys' hangout. A few minutes of male-bonding is good for the soul! It is BYOB of course.
Register in advance for this meeting:
https://us02web.zoom.us/.../tZUkceCrqz8uEtVEazfuwkvS6fh...
After registering, you will receive a confirmation email containing information about joining the meeting.
Texas Family Meetup
Meet other KCNT1 families living in Texas! Who knows, maybe the next meetup will be in person! Register here.
International Epilepsy day
KCNT1 Epilepsy Foundation is proud to join the epilepsy community in recognizing the second Monday in February as International Epilepsy Day.
Precision Medicine World Conference
We're excited to share that our President, Dr. Justin West, will be on the "Patient Advocacy in Rare Disease Therapies" panel at the Precision Medicine World Conference
Panelists include:
Yael Weiss, Mahzi Tx (Chair)
Michael Graglia, Syngap Research Fund
Wendy Erler, Alexion Pharmaceuticals
This is a fantastic opportunity to highlight the challenges and advancements in rare disease therapies. Stay tuned for insights from Dr. West and the conference
KCNT1 Family Meeting
Tomorrow! 10:00 am Eastern Standard Time
ADNFLE/SHE families, join us for a casual family meetup!
Time: Jan 20, 2024 07:00 AM Pacific Time (US and Canada)
Join Zoom Meeting
https://us02web.zoom.us/j/83252452297?