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 Week Facebook 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 so that everyone can see it!

kcnq2 awareness toolkit

Download Awareness Toolkit

Get Your Facts Straight

One of the best ways to spread awareness about KCNQ2 epilepsy is to educate others about the impact of this devastating disease.  Annually the first week of March, KCNQ2 Cure Alliance launches Get your Facts Straight on Facebook, Twitter, and Instagram. This campaign shares two KCNQ2 facts each day.

Help us spread the message far by liking, sharing, re-tweeting, and commenting on the 14 facts. View facts here.

Share Your Story

Spotlight

Hi KCNQ2 Cure Families! Our KNCQ2 Cure Awareness week is March 1-7 – and we want to highlight our amazing kiddos. It’s been a tough year – but our kids have powered on, even though it’s been harder for them than many other kids. That’s why we want to shine a spotlight on the accomplishments of your child with KCNQ2. If you’re interested to participate, just fill in the template on behalf of your child with KCNQ2.
  • (some examples could be: swinging in my swing, hanging out with my family, patting our dog, being outside, listening to music, etc)
  • (some examples could be: choosing between two options, sitting up, learning to use Picture Exchange, giving my Mom a High 5, cooking with Dad, tackling online therapy, or anything you like!)
  • (some examples could be: I am a fighter, I am not defined by my diagnosis, etc.)
  • Accepted file types: jpg, jpeg.

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.

What Else Can I Do?

  • 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.
  • Educate. Give a presentation at your child’s school or a group you belong too!
  • Enroll in research studies to help promote research.

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