Koolen-de Vries Syndrome (KdVS) Awareness Day

Koolen-de Vries Syndrome Awareness Day is observed annually on July 17. The goal is to raise awareness for Koolen-de Vries Syndrome (KdVS) and to bring people together across the globe to show support for those who are impacted by this rare genetic syndrome. Why the 17th? Because the microdeletion or the KANSL1 mutation is located on the chromosome 17.

Many people living with KdVS have medical and educational issues including but not limited to developmental delays, heart conditions and epilepsy. Early diagnosis and intervention are key, and only through awareness can we reach more families and individuals impacted by KdVS and ensure they have the information and tools they need.

Show Your Support

Support the Koolen-de Vries Syndrome Foundations efforts to fun research by purchasing and showing off some Kool Merch. Every little bit we do helps spread awareness! Shop Kool Merch HERE.

 

You can also show your support for KdVS with a special frame for your profile picture on social media. Support KdVS Awareness Day by adding a special banner to your social media profile picture!

too kool for this shirt

Fundraising

KdVS Awareness Day is also marks the beginning of our annual Kool Kampaign. The community rallies together year-round to help raise funds for research but we like to kick-up the effort annually from July 17th – September 17th to raise funds and awareness to KdVS.

We’ve started a list of ideas you and your family to help fundraise annually:

  • Car washes and bake sales are great traditional and effective forms of fundraising.
  • Approach a brewery about having a beer names after a KdVS individual.
  • Sell a product such as spa services, jewelry, or makeup with proceeds going to the KdVS Foundation.
  • Similar to the brewery idea, partner with a restaurant where a portion of one evening’s sales go to the KdVS Foundation.
  • Ideas that may take a bit more effort include golf tournaments, market pop ups or fundraising galas.

 

If you have other great fundraising ideas, we’d love for you to share them with us and the community! Visit our contact page and send us a note to get involved.