KCNQ2 Awareness Week

What is KCNQ2 Awareness Week?

KCNQ2 Cure Alliance established KCNQ2 Awareness Week, March 1st-7th annually, in 2015 as another important platform to elevate the message of need and hope for everyone touched by the condition.

KCNQ2 Awareness week is an annual virtual event aimed at raising awareness, education, and advocacy for the international community affected by KCNQ2 Epilepsy.

We have come so far in the past few years from a small community of passionate families to a vibrant community driving important precision medicine initiatives for our uncommon disease. In the recent past, we have helped establish an international collaboration collecting and curating variant data, sponsored mouse model research at the leading lab in the world, moved into testing existing compounds against human cell models with partners and greatly expanded academic research efforts and pharmaceutical company interest through our annual summit.

Much remains to be done and relies on the contributions of the entire community.

Awareness Week ideas

Personalize your social media profile

Add the KCNQ2 Cure Awareness Facebook and Instagram photo overlay. Then, upload them to your social media profile and make a status update about why you support KCNQ2 Awareness Week. Be sure to make your status update public and use the hashtag, #KCNQ2strong #KCNQ2epilepsy #KCNQ2cure #cureKCNQ2 so everyone can see it!

kcnq2 awareness toolkit

Download Awareness Toolkit

Download awareness images

What Else Can I Do?

  • Awareness decals. You can order KCNQ2 awareness decals here.
  • Ditch your lunch. Choose one day to skip your lunch in honor of your loved one with KCNQ2. Ask your friends, family, and co-workers to join you and donate what they would have spent on lunch to KCNQ2 research.
  • 20 for 20. Give$20 for chromosome #20 and share your post with 20 friends.
  • Educate. Give a presentation at your child’s school or a group you belong to!
  • Enroll in research studies to help promote research.

Make it Official: Get A Proclamation

Declare the first week of March KCNQ2 Awareness Week in your city or state. Fill in our proclamation template and submit it to your elected official for a signature and official declaration. Then share your proclamation on social media, send it to your local newspaper, and email us to let us know about your accomplishment.

Host or Attend an Event

Events are a great way to raise awareness about KCNQ2 epilepsy. Here are a few fundraising ideas that you can try:

  • Bake sale or cook-off
  • Garage or estate sales
  • Happy hours or trivia at your favorite restaurant
  • Walks, runs, marathons, or half-marathon
  • Sports outings or scrambles (golf, basketball, volleyball, badminton, etc.)

If you’ve never planned an event before and you’re not sure how to start, we are here to help. Download our fundraising toolkit.

NHIS Dinner 2017 - spekers with Sara

Share Your Image

For our 2024 Awareness Week, we ask families to join us in our #KCNQ2unfiltered campaign. To participate in our campaign, please complete the form and share a brief story of how KCNQ2 impacts you and your child's lives. As parents and caregivers, we like to share the good times, but we also need to share the real raw times so people can begin to understand KCNQ2 beyond what sugarcoat.

Attaching a photo of your child will allow us to add their image to our awareness video. To participate in #KCNQ2unfiltered, upload an image and share your raw experiences with KCNQ2. If you share a story, your image will be in both the video and the campaign.

Awareness Images

Parent Name(Required)
Not to be published. For consent only.
Child's Name(Required)
Please indicate years or months
This year, for KCNQ2 Awareness week, we are asking families to share a short story about the ups AND downs of KCNQ2 for our #KCNQ2unfiltered campaign.
Max. file size: 50 MB.