Koolen-de Vries Syndrome Foundation

08/25/2026

📓 New school year. New routines. New adventures.

Back-to-school season is here, and while we may see plenty of first-day photos and new backpacks popping up, we know that new beginnings can look different for everyone.
For our KdVS community, a new season might mean:

🎒 Starting a new school year�🚌 Beginning a new program or activity�💼 Exploring work or vocational opportunities�🏡 Taking a new step toward independence�🤝 Building new friendships and connections�🌱 Finding a new routine that works for you

And sometimes, a new season simply means continuing to grow right where you are.

Whether you're headed back to school, starting something new, or navigating a transition that doesn't come with a first-day photo your next chapter matters.

What does this new season look like for you? 💙

08/16/2026

🚨 The final days of the 2026 Kool Kampaign are here! 💙

Time is running out to help us reach our goal before the campaign ends on August 17.

Every donation supports critical KdVS research, brings hope to families around the world and helps move us closer to better understanding, improved care and future treatments.

Here's how you can make a difference:�💙 Make a donation�💙 Share this post with your family and friends�💙 Start your own fundraiser and inspire others to give

Every gift matters. Every voice matters. Research matters.

Thank you for standing with the KdVS community and helping create a brighter future for every individual and family affected by Koolen-de Vries syndrome.

Donate today and help us finish strong!

08/13/2026

Wow, thank you RARE Revolution Magazine for the feature! Our next round of families are visiting in September!

📢Sound off in the comments about your experience (for those who have been) or what our new visitors are looking forward to!

The Koolen-de Vries Syndrome Foundation (KdVSF) is proud to announce the official opening of its first-ever multidisciplinary clinic, called the Kool Klinic at Children’s Hospital Colorado in Aurora, Colorado, beginning April 2026. This important partnership brings coordinated, comprehensive care to individuals affected by Koolen-de Vries Syndrome (KdVS), offering families access to a full team of specialists in a single clinic experience. Read more here:
https://rarerevolutionmagazine.com/koolen-de-vries-syndrome-foundation-and-childrens-hospital-colorado-launch-first-u-s-multidisciplinary-clinic-titled-the-kool-klinic/
Koolen-de Vries Syndrome Foundation

08/12/2026

One person can make a difference.
One family.
One fundraiser.
One donation.
One shared post.

Together, those individual acts become something extraordinary.

Every gift to the Kool Kampaign supports research, resources and hope for individuals and families living with Koolen-de Vries syndrome.

💙 Every dollar is still being matched.�💙 Every gift brings us closer to our goal.�💙 Every person matters.

Join us today: https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/kool-kampaign-2026

08/08/2026

🏃‍♂️ Every mile tells a story. Every donation changes one.

As many of you may or may not know, Dr. Bert de Vries isn't just passionate about advancing research... he's also an avid marathon runner!
This year, Dr. Bert de Vries is turning his miles into meaningful impact by running in support of the Kool Kampaign. 💙💚

If Bert's work has touched your family or helped bring hope to our community, we'd love for you to cheer him on by making a donation to his fundraising page. Every gift, no matter the size, helps accelerate research, expand family support, and move us closer to a brighter future for everyone affected by Koolen-de Vries syndrome.

Let's rally behind Dr. de Vries as he takes on the Sydney Marathon one step, one mile, and one family at a time.

💙 Donate here: https://bit.ly/4feCrjV
�🏃 Cheer Dr. Bert de Vries on in the comments and wish him luck!

08/07/2026

Board member, wife and mom, Megan Hartwell, shares a special message for the Kool Kampaign.

Join us by:
✨Creating a fundraiser
✨Making a donation
✨Sharing our mission

Every gift brings us one step closer to better treatments and beyond.

Together, we can make an incredible impact!

https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/kool-kampaign-2026

08/04/2026

Exciting news!

The inaugural European Summit is coming to the Netherlands in 2026!
This special event will bring together families, researchers, clinicians, and advocates from around the world to share knowledge, spark collaboration, and accelerate KdVS research - together!

More details to be shared soon! Follow along for updates or visit https://kdvsfoundation.org/european-summit-2026/

08/04/2026

🧬 Research is the reason we do the Kool Kampaign.

Every family affected by Koolen-de Vries syndrome deserves hope. Hope for answers. Hope for better care. Hope for future treatments.

That's why every dollar raised through the Kool Kampaign supports the groundbreaking research that is expanding our understanding of KdVS and moving us closer to new discoveries.

💙 And now, your impact goes even further.

Thanks to two generous matching gift donors, every eligible gift to the Kool Kampaign will be doubled—meaning every $1 donated becomes $2 to help accelerate KdVS research!

There's still time to make a difference! You can:
✅ Make a matched donation
✅ Create your own Kool Kampaign fundraiser and invite your friends and family to join the mission

Together, we're investing in research. Together, we're creating hope. Together, we're changing the future of KdVS.

Donate or start your fundraiser today: https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/kool-kampaign-2026

08/02/2026

💙💚We only need FIVE more kool individuals to reach our goal of 100 total participants in the first year of our Natural History Study!

If you or your loved one has Koolen-de Vries syndrome and haven't enrolled yet, now is the time. By participating, you're helping researchers better understand KdVS and paving the way for future discoveries, improved care, and potential treatments for our community.

Every participant makes a difference, and these final five families can help us reach a milestone that will have a lasting impact on KdVS research.

Know a KdVS family who hasn't signed up yet? Please share this post and link below to help us cross the finish line together!

https://combinedbrainx.acrossmatrix.com/en-US/ #/user-request

💙 Thank you to every family who has already joined this important study. We couldn't do this without you.

07/31/2026

💙 Look what we're accomplishing together!

The Kool Kampaign is gaining momentum, and it's all because of this incredible community. Every donation, every fundraiser, and every share is helping advance research and bring hope to individuals and families living with Koolen-de Vries syndrome.

📈 Campaign Progress

There’s still plenty of time to make an impact!

✔️ Make a donation and help unlock more of our matching gifts generously provided by amazing kool families.

✔️ Create your own fundraising page and invite your friends and family to join you. Every fundraiser, big or small, brings us one step closer to our $150,000 goal.

Thank you for believing in our mission and helping build a brighter future for the KdVS community.

👉 Donate or start your fundraiser today:
https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/kool-kampaign-2026