Koolen-de Vries Syndrome Foundation

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

06/14/2026

Thank you for Joining the Journey! And thank you Meagan for dedicating this tremendous climb to the kool community! Wishing you safe travels back home.

Head’s up Kool Community!The next Clinic Day at our multidisciplinary Kool Klinic at Children’s Hospital Colorado will ...
06/14/2026

Head’s up Kool Community!

The next Clinic Day at our multidisciplinary Kool Klinic at Children’s Hospital Colorado will be on June 24th! To sign up for future dates, simply contact our nurse coordinator, Ryleigh at [email protected]. Ryleigh can answer questions about scheduling, preparation and what to expect.

What to Expect at the Kool Klinic (serving ALL ages):
-Care centered on the unique needs of KdVS individuals
-Collaboration among experienced KdVS clinicians
-A supportive, family-centered environment
-Coordination to reduce the burden of multiple appointments
-Reach out if you have any questions or concerns about costs.

Also, if you are interested in filming a day in the life at Kool Klinic, please feel free to reach out to [email protected]; we’d love to share your experience with the community!

Meagan made it to the summit of Pico Austria (17,000ft (~5,300m)—for Chromosome 17 for Koolen-de Vries syndrome)!Today, ...
06/12/2026

Meagan made it to the summit of Pico Austria (17,000ft (~5,300m)—for Chromosome 17 for Koolen-de Vries syndrome)!

Today, Meagan reached the top in honor of families living with KdVS and all those who joined us throughout this journey.

Alongside the KdVS flag, we also carried the names of those who donated and chose to honor themselves or someone they love as part of Join the Journey.

This moment belongs to every family, donor, advocate, and supporter who helped make this campaign possible.

Thank you for joining the journey and helping bring greater awareness, support, and hope to the KdVS community.



There's still time to add your name as support to Meagan's climb!
https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/join-the-journey-with-kdvs-foundation

While Meagan is climbing to the top of the world, Ashley, Anna and Ricardo were representing KdVSF at sea level (Boston)...
06/11/2026

While Meagan is climbing to the top of the world, Ashley, Anna and Ricardo were representing KdVSF at sea level (Boston) at the World Orphan Drug Congress. We learned more about gene therapies, drug repurposing, interacting with the NIH and FDA and met several future partners. And we presented our poster about KdVS patient priorities. Things are looking bright for the future of rare disease.

Meagan has officially arrived in La Paz, Bolivia and is preparing for summit day.As she gets ready for the climb ahead, ...
06/11/2026

Meagan has officially arrived in La Paz, Bolivia and is preparing for summit day.

As she gets ready for the climb ahead, she is carrying the strength, resilience, and hope of the KdVS community with her every step of the way.

Join the Journey is about more than reaching the summit. It is about honoring families living with KdVS and reminding them that they are never alone on this path.

There is still time to add your name or honor someone you love as part of the climb and support research, awareness, and hope for the KdVS community.

The summit is getting closer– Join the Journey today!



https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/join-the-journey-with-kdvs-foundation

Communication looks different for every individual with Koolen-de Vries syndrome, and having the right tools can make a ...
06/10/2026

Communication looks different for every individual with Koolen-de Vries syndrome, and having the right tools can make a meaningful difference.

Thanks to the incredible work of Miya St. John and Professor Angela Morgan of Murdoch Children's Research Institute, families have access to valuable speech and language resources designed specifically for the KdVS community.

🗣️ Speech & Language Resources
📚 Practical information for caregivers and families

What communication milestone are you celebrating right now? Whether it's a first word, using AAC, improved confidence, or another achievement, we'd love to celebrate with you below! 💙

Today the journey begins!Our team is officially heading to Bolivia as we begin the climb in honor of families living wit...
06/08/2026

Today the journey begins!

Our team is officially heading to Bolivia as we begin the climb in honor of families living with KdVS.

Over the next several days, we’ll be sharing moments from the journey leading up to summit day and carrying the strength of this incredible community with us every step of the way.

You can be part of the climb by adding your name or honoring someone you love as part of the journey.

Follow along as the journey begins!



https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/join-the-journey-with-kdvs-foundation

Join the Journey!This week, KdVS Foundation Research Coordinator Meagan Hutchinson will travel to Bolivia to summit Pico...
06/07/2026

Join the Journey!

This week, KdVS Foundation Research Coordinator Meagan Hutchinson will travel to Bolivia to summit Pico Austria in honor of families living with KdVS.

Rising to approximately 17,000 feet, the climb carries special meaning as a tribute to Chromosome 17, where the genetic change associated with Koolen-de Vries syndrome occurs.

Every step represents resilience, perseverance, and hope within the rare disease community.
As we begin building momentum toward the KdVS Foundation’s largest fundraiser of the year, the Kool Kampaign this summer, Meagan is helping kick things off through this meaningful journey of awareness, community, and support.

When you make a gift during the campaign, you’ll “Add Your Name to the Climb” and symbolically join the journey to the summit alongside our community.

Together, we climb toward hope, awareness, and progress for families living with KdVS.

Join the Journey today!

https://secure.givelively.org/donate/koolen-de-vries-syndrome-foundation/join-the-journey-with-kdvs-foundation

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Wilmington, NC

Telephone

+18337315387

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