The Foundation supports families, funds research, raises awareness, and connects individuals living with KdVS. Our mission is to ensure no one affected by KdVS feels isolated and to accelerate the research and therapies.

The Koolen-de Vries Foundation Legacy Society is a group of donors who have chosen to include the Foundation in their will or estate planning, donors who have contributed or raised $20,000 or more.

You can be invited to join the Koolen-de Vries Foundation Legacy Society if you are 1) a donor who has contributed or raised $20,000 or 2) you have included the KdVS Foundation in your will or estate planning.  If you have included KdVS Foundation in your will or estate planning, please complete the Legacy Intention Form.

Yes, we are a 501(c)(3) nonprofit organization. All donations are tax-deductible to the extent allowed by law.

Donations and gifts can be mailed to 609A Piner Road Suite 319, Wilmington, NC 28409. Contributions can be made online at www.kdvsfoundation.org/donate. To make a stock gift, please contact [email protected].

Absolutely. Tribute gifts can be made online or by mail. You may choose to notify the family, and we can include their name in our donor acknowledgements or at events.

Yes. You can designate gifts to the general fund, research, or to the Patient Advocacy Summit. Unique opportunities to fully subsidize studies, researchers, and clinics are available. Please contact [email protected] for more information.

There are several ways. You can designate KdVS Foundation as a beneficiary of your IRA, life insurance, or donor-advised fund. You can establish a charitable gift annuity or trust. You can also name KdVS Foundation in your will or living trust. We recommend speaking with your financial advisor or attorney.

Donations help fund scientific research and genetic studies, maintains a global family and caregiver network, and hosts educational webinars and conferences.

The Foundation hosts numerous events on an annual basis that may include virtual meet ups, family forums, in-person events, and a bi-annual Patient Advocacy Summit.

We are involved in supporting research that includes natural history studies, gene therapy and functional studies of KANSL1, clinical registry and patient-reported outcomes, as well as medical, neurological, behavioral, and communication interventions.

Yes, we love and rely on community-led events. Whether it’s a 5K, birthday fundraiser, auction, or bake sale, we ask that if using KdVS to raise funds – that all proceeds go directly to the Foundation. Branding requests and guidelines can be provided from the KdVS Foundation.

You can follow us on Instagram or Facebook, participate in monthly KdVS Foundation Call, join our email list, visit our website regularly, and attend the Patient Advocacy Summit.