September 17th
Kleefstra syndrome Awareness Day

Kleefstra syndrome awareness day is celebrated throughout the KS community on 17th September. This is because the majority of individuals with KS have a deletion on chromosome 9 at 9q34.3. The 9th month of the year is September and the 17th letter of the alphabet is Q.
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In previous years families have raised awareness of KS by having t-shirts made, KS themed cakes and even KS related tattoos.

Kleefstra syndrome video

Join us in celebrating Kleefstra Syndrome Awareness Day. Our children are special, beautiful and although we have times that are challenging, we love them deeply. Hold that thought and spend a few moments with the inspiring pictures and videos sent in by our Kleefstra Family. Thank you for sharing your beautiful children with us.

What can you do for Awareness Day?

Wear purple
Wear purple and turn your friends’ social media feeds purple! Share photos of yourselves and your loved ones celebrating awareness day.

Update your social media profiles
We would like to invite the KS community to join together and change their profile picture/cover picture to the KS awareness day badge. We hope this will create a buzz on Facebook which will help to spread awareness of this rare syndrome.
To get the badge click the image above to open. Then use ‘right click > save image’ as to save a copy, or use the image below.

Share our awareness infographics
Here are some Kleefstra syndrome infographics you might like to share to help raise awareness of Kleefstra syndrome.  These are great printable resources to share at your Ks awareness day events.  These were kindly designed for a fellow Ks parent by Francisco B. Escalante, communications specialist, (Retail services) at Advent Health.

ShareYourSelfie and share the #Kleefstralove!
We have designed a number of selfie templates which can be downloaded and printed. The templates include a starting statement with space for families to write personal messages on. Take a photo of yourself or your family members holding the completed sheet and post it on Facebook, Twitter or Instagram using the hashtags #KSAD20 #KleefstraAwareness. We hope that you will enjoy taking part in this fun way to raise awareness and if you can please encourage family and friends to join in too.

Keep liking us!
Please encourage family and friends to like our Facebook page and follow us on X to keep to date with events, important information and KS developments

Ks Awareness Card
Download and print out KS Awareness card. Awareness cards are a useful tool for those times when you may need to help create a little more awareness. To create your card you can access the image by using ‘right click > save image as’ to save a copy.

Right Click, Save Image