It’s time to get your GROOVE on June 25-26 by taking part in the STELLA STRONG CDKL5-5K! This is a virtual event hosted by Stronger Together to raise awareness for the rare genetic disorder known as CDKL5 Deficiency Disorder and takes place over the last weekend of June to celebrate the closing of World CDKL5 Awareness Month. As much as we were hoping to host an in-person event to get our groove on this year, CDKL5 puts Stella and all with this ailment in the high-risk category, and we want to keep everyone safe. So virtual we remain, which means flexible this event is!
CDKL5 Deficiency Disorder (CDD) is a rare genetic disease that causes both daily seizures as well as severe development impairment. There are still no definitive drugs or treatments available to manage the seizures and there is such a wide range of development success rates that there is no way of knowing which kids will ever walk and which kids never will. That is why we have to raise awareness for a cure and get our GROOVE on for all of those kiddos that can’t GROOVE for themselves!
So, how does the event work exactly? Glad you asked! We invite you to run, walk, hike, bike, swim, take a bootcamp class, or dance your way to a 5k (aka 3.1 miles) at any time over the weekend of Saturday, June 25th and Sunday, June 26th! It’s that easy! We just ask that you share your efforts with your various networks by wearing the Stella Strong CDKL5 bib during your GROOVE in order to help make CDKL5 the most well known rare disease in the world and to help find those brilliant minds who will help with a cure!
Details
When: Any time that fits your schedule between June 25 - June 26! But if you need some guidelines:
Start 6:00am PST Saturday, June 25
End: 8:00pm PST Sunday, June 26
What: Join us for the virtual Stella Strong CDKL5-5K
Cost: Free
Where: Anywhere you can be active! While we do not have an official 5k route, we will be sharing 5k route ideas and fitness events hosted by our volunteer leaders, our Stella Stars.
How: Run, walk, hike, bike, swim, row, or dance your way to a 5k! Track your progress on the Nike Run Club App to share your progress . After downloading the app and signing up for the event you will receive an invite via text to the Stella Strong CDKL5-5K Challenge.
Get your Groove on and Sign up today!
· Sign up for the event at StellaStrong.com
· Download the Nike Run Club App
· Join the Stella Strong CDKL5-5K: https://nikerunning.app.link/qk5glz4XVqb
How to Participate
Follow us on Instagram and Facebook to access all our event activities and to see what other members of our community are doing
Get involved by wearing our official event bib (printable). If you’re feeling extra spirited, also wear the official CDKL5 Awareness color of lime green during your groove and photoshoot 💚 to support CDKL5 and/or orange 🧡 to show support for @TeamStellaStrong and our inspiration to continue the search for a cure
Share a picture or video of your participation on your social channels using #IAmStellaStrong, #CureCDKL5, and #CureRare
Want to do something in person? Contact these generous organizations that are hosting special events for Stella Strong CDKL5-5K.
So now to answer the big question that we are all wondering: How does Stella get her groove back? Only with YOUR help and participation in making CDKL5 the most well known rare disease in the world by telling your networks to get their groove on June 25th - June 26th!
Thank you for supporting our mission to bring awareness and provide support to individuals, families, friends, caretakers, scientists, researchers and so many more that are impacted by this terrible rare genetic disorder known as CDLK5 or CDD. We look forward to seeing your sweaty selfies and group photos and where you land on the leaderboard!
Let’s Get Groovy!
Please fill out the information below.
Once you finish, please be sure to download and print out your bib below as well as check out how to join our event on the Nike Run App! Check out our playlist as well!
We look forward to hearing how you completed your 5k!
