Koolen-de Vries Syndrome Foundation

Call Website Contact the organization

Koolen-de Vries Syndrome Foundation Non-profit promoting awareness and education about Koolen-de Vries Syndrome

10/10/2026

Happy World Mental Health Day!

Strong minds. Stronger communities. 💪

For families navigating Koolen-de Vries Syndrome, the journey can come with challenges that affect more than just physical health. Mental and emotional well-being matter, too.

Today, we’re reminding our Kool Kommunity to check in, take a breath, ask for support and give yourself grace. You don’t have to navigate the hard days alone. 💙

Let’s keep building a community where it’s okay to talk about mental health, ask for help and support one another along the way.

Happy World Mental Health Day from the KdVS Foundation! 💙

[Graphic from the KdVS Foundation celebrating World Mental Health Day. The design features the words “Mental Health,” “Stronger Minds, Stronger World,” and “Happy World Mental Health Day,” along with an illustration of a smiling brain lifting weights.]

💡 Did you know you can create an impact that continues for generations?By including the KdVS Foundation in your will or ...
10/08/2026

💡 Did you know you can create an impact that continues for generations?

By including the KdVS Foundation in your will or estate plans, you can help build a future of possibility for individuals with Koolen-de Vries syndrome and their families.

You may also be eligible to join the KdVS Foundation Legacy Society if you have included the Foundation in your estate plans, or if you have contributed or raised $20,000 or more.

Your legacy can help sustain Connections, Advocacy, Research and Education, CARE, for years to come.

💚 Learn more: https://kdvsfoundation.org/legacy

Are you part of the KdVS community? Make sure you're connected! 🌎💙The KdVS Foundation Contact Registry is a confidential...
10/07/2026

Are you part of the KdVS community? Make sure you're connected! 🌎💙

The KdVS Foundation Contact Registry is a confidential database for KdVS families around the world. By registering, you can help the Foundation better understand where our Kool Kommunity is located and make connections with other KdVS families in your area. 🤝

Being part of the registry also helps us better understand the growing KdVS community and share important information about the number of registered individuals with our Medical Advisory Board.

Whether you've been part of the Kool Kommunity for years or are just getting started, make sure your family is counted! 💙

👉 Register or learn more: kdvsfoundation.org/contact-registry

[KdVS Foundation graphic highlighting the Contact Registry. The KdVS logo appears at the top, with a graphic representing connections between people in the center. Text reads “Contact Registry” and directs viewers to Contact Registry - Koolen-de Vries Syndrome Foundation | KDVS .]

💡 Did you know you may already have resources available to increase your impact?Your employer may offer a workplace-givi...
10/05/2026

💡 Did you know you may already have resources available to increase your impact?

Your employer may offer a workplace-giving or matching-gift program that can increase the value of your donation to the KdVS Foundation.

If you have a donor-advised fund, you can also recommend a grant to support our mission.

Check with your employer, financial institution or donor-advised fund sponsor to explore the options available to you.

Questions? Contact Donald DeAngelis at [email protected].

10/04/2026

A heartfelt THANK YOU to everyone who attended and presented at the 2026 KdVS European Summit in Nijmegen, the Netherlands!

We are incredibly grateful to the researchers, clinicians, families, advocates and community members who came together from around the world to share knowledge, ask questions, build connections and advance our understanding of Koolen-de Vries Syndrome.

To our presenters: thank you for sharing your research, expertise and passion for improving the lives of people with KdVS.

To the families and community members who attended: thank you for showing up and sharing your experiences.

Together, we are strengthening collaboration, advancing research, and building a brighter future for the KdVS community.

🌍 **Look what we accomplished together!** 💙The Koolen-de Vries Syndrome Foundation held our first European Summit, bring...
10/03/2026

🌍 **Look what we accomplished together!** 💙

The Koolen-de Vries Syndrome Foundation held our first European Summit, bringing together the global KdVS community in an incredible 2 days of science, collaboration, and family connection.

More than 25 researchers joined us from around the world, along with 20+ caregivers/families from the UK, Germany, France, US, the Netherlands, and beyond.

We brought together basic and translational scientists, geneticists, industry experts, multidisciplinary clinic leaders, clinicians, therapists—and most importantly, families living with KdVS.

Researchers made new connections and began new collaborations. We toured the lab and saw KdVS organoids, iPSC lines, neurons, and astrocytes—tiny pieces of our community being studied in the hope of building a better future.

This is what happens when families, scientists, industry, clinicians, and advocates come together with one goal: moving KdVS research forward.

And we’re just getting started. ❤️

And next up: **U.S. Summit — July 2027!** 🇺🇸
And then back for European Summit 2028—we’ll see you there!

Thank you to everyone who showed up, shared their expertise, asked questions, made connections, and continues to push toward a treatment for KdVS. Thank you to our sponsors, including Simons Searchlight for recognizing the importance of scientific and family meetings!

Together, we will move faster. 💙

October is National Disability Employment Awareness Month ( )! 🌟 While NDEAM is a U.S. tradition, the KDVS Foundation is...
10/01/2026

October is National Disability Employment Awareness Month ( )! 🌟 While NDEAM is a U.S. tradition, the KDVS Foundation is proud to support an incredible, vibrant community that knows no borders. 🗺️❤️

From classrooms to workplaces, individuals with Koolen-de Vries Syndrome are breaking barriers, sharing their unique talents, and making a lasting impact every day. True inclusion isn't regional, it's universal.

This month, we invite our global community to join us in amplifying the voices of disabled professionals and advocating for truly accessible workplaces worldwide. Because when everyone is given the tools to succeed, our entire global community wins. 🤝🌐

❤️ Who are you celebrating this month? Tag a kool adult, boss, or advocate in the comments below who deserves a shoutout for their hard work and dedication to making the world a more accessible place!

[Image Description: A vibrant blue and white graphic from the Koolen-de Vries Syndrome Foundation featuring a diverse group of professionals with visible disabilities. Text reads "National Disability Employment Awareness Month - October 2026 - Championing Disability Inclusion Worldwide."]

💡 Did you know special moments can become meaningful opportunities to support KdVS?Make a tribute gift in honor or memor...
10/01/2026

💡 Did you know special moments can become meaningful opportunities to support KdVS?

Make a tribute gift in honor or memory of someone special, or bring your community together by hosting a fundraiser for the KdVS Foundation.

Birthdays, races, school activities, auctions and neighborhood gatherings can all help raise funds, build awareness and introduce more people to our mission.

However you choose to participate, you can make it personal, and make a difference.

💚 Discover ways to get involved:https://kdvsfoundation.org/fundraising

🌍 The inaugural KdVSF European Summit is officially underway! 💙Today and tomorrow, researchers, clinicians, families, an...
10/01/2026

🌍 The inaugural KdVSF European Summit is officially underway! 💙

Today and tomorrow, researchers, clinicians, families, and members of the KdVS community are coming together in the Netherlands for two days of connection, learning, and collaboration.

🔬 Day 1: Scientific Summit
The first day is focused on advancing our understanding of KdVS through expert presentations, panel discussions, and a lab tour for attendees.

💙 Day 2: Scientific & Family Summit
The second day brings the scientific and KdVS communities together with research assessments, clinical and translational talks, patient-oriented sessions, and community discussion, plus a reception after the family summit!

This gathering represents an exciting opportunity to bring people together across Europe and beyond, share knowledge, strengthen connections, and continue building momentum for the KdVS community.

We’re so excited to bring this Summit to Europe!

Address

Wilmington, NC

Telephone

+18337315387

Website

,

Alerts

Be the first to know and let us send you an email when Koolen-de Vries Syndrome Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Koolen-de Vries Syndrome Foundation:

Shortcuts

Share

Category