Description

Join us for the 4th annual KCNA2 Epilepsy Fun Run September 14, 2025 as we run, walk and roll toward our goal to raise $25,000 for research of novel treatments and methods of faster diagnosis to help babies, children and adults and their families with this rare form of epilepsy live healthier. Gifts from previous years have funded research of KCNA2 Epilepsy leading to earlier diagnosis and putting us on a path toward promising treatments. Even though our understanding is advancing quickly, it is still in early stages and we need your help to develop safe treatments to protect children from the life-threatening effects of KCNA2 Epilepsy.  

For 2025, we will once again gather in beautiful Tigard, Oregon’s Cook Park to run, walk or roll and help children and families from all over the United States and the world.  

The scientists we work with at the University of Toronto and the University of Tübingen, Germany have found promising compounds to treat KCNA2 made possible by a $25,000 research grant in 2024 fully funded by KCNA2 parents, family members and friends.  
Will you help us accelerate advances and treatment options by participating in the 2025 KCNA2 Epilepsy Fun Run, making a gift in honor or support of someone, or by inviting friends and family to support KCNA2 Epilepsy research? 

What is KCNA2 Epilepsy? 
KCNA2-related developmental and epileptic encephalopathy is a neurological disorder caused by a mutation on the KCNA2 potassium channel. The mutation causes the potassium channel to function improperly resulting in epilepsy and developmental disorders, including autism. There are a variety of complications for each individual such as intractable seizures, developmental and cognitive delays, and complex medical conditions. Learn more at: kcna2epilepsy.org 

What is the KCNA2 Epilepsy organization? 
KCNA2 Epilepsy was founded in 2021 as a 501c3 nonprofit organization with the mission to promote education and awareness so patient-focused research and effective treatments become available. Our vision is to connect families affected by KCNA2 Epilepsy with treatment options, professionals,  and provide support to improve outcomes.

Since our founding less than 5 years ago, our reach has become global and our reputation as an advocacy and research convener has helped to advance awareness and hope for effective treatments. The KCNA2 Board of Governors is made up of parents and devoted professionals with passion who are dedicated to turning hope for better understanding of potassium channelopathy identification and treatment into real answers. We work with physicians and researchers to deepen understanding and educate parents, other physicians and researchers. 

To date, more than 200 families from around the world have benefited from education and new knowledge gained from scientists. Our goal is to raise support to fund research partnerships with leading genetic and epilepsy researchers who will identify effective treatments and early diagnosis of KCNA2 Epilepsy.  The need for advocacy, research opportunities, and effective treatment interventions is great, but we hold great hope for new understanding. 

Please consider joining us in-person in Tigard, OR, host your own event to raise awareness, or make a gift to strengthen support and awareness to help accelerate the pace of research. 

Event Day Schedule 
8:30 AM - Packet pick-up and last minute registration
9:00 AM - Run begins
9:00-10:30 AM - Finish line refreshments, raffle, and gathering
10:30 AM - Course closes and event ends

Important Details

• Packet pick-up, start, and finish are all located at Shelter 4 of Cook Park, Tigard.
• All abilities are welcome! Run, walk, roll, skate, or scoot!
• The entire course is within Cook Park and all paths are shared with the general public. Please be courteous of others and stay to your right.
• There will not be a bag check so please plan accordingly.
• Free parking is available throughout Cook Park and there are two ADA spots nearby.
• Public restrooms are available near the start/finish.
• Portland weather can be unpredictable. This event will happen rain or shine!
• Dogs: dogs are welcome to join us on the run/walk, but must be on a leash. 

Registration Cost
Early Bird - Before July 1:
$25 per adult
$15 per child
Regular registration - July 1 through August 31:
$30 per adult
$20 per child
Late registration - Sept 1-14:
$40 per adult
$25 per child

What's included? Bib number, raffle entry, free coffee and finish line refreshments. T-Shirts are available to add to your race packet when you register by August 17.

Volunteers Needed! 
If you would like to volunteer for this event, please click HERE to fill out a form.

VIRTUAL OPTION
Gather your friends and family and do your Fun Run & Roll wherever you are! Submit your results here on RunSignUp or send us a snapshot of your GPS run and we will include them in the final results. Photos are also welcome and encouraged!

USA: Register by September 1 to receive your packet in the mail before the event date. Registration will be accepted after this date but we cannot guarantee that you will receive your items before the event date. 

International participants: This option is no longer available. Please consider donating instead of registering. We also encourage you to host your own Fun Run & Roll event in your area! We are happy to support and provide guidance. Contact [email protected]

HOST YOUR OWN EVENT

We encourage those not located near Portland, Oregon to host their own event! It can be as simple as a picnic in the park, or as elaborate as you wish! Become a fundraiser on our website, set your donation goal and get the word out! We can also provide you with a toolkit to give you ideas and help you organize your fundraiser for KCNA2 Epilepsy. We are here to support you along the way. Contact Oriana at [email protected] if you have questions.