Fundraise for Research

Since IDefine launched in 2020, we have been intent on raising funds to build a brighter future for our loved ones with Kleefstra syndrome.  For us to move our mission forward in building our community, further developing understand and coordinated medical care, and to accelerate our abilityto bring a treatment to our loved ones, we need you.  We must create the future we hope for.  Through fundraising, we can raise awareness, and drive progress on cutting edge research technologies.  We are here to help-take action today!

Our Blog

McDonald family Tenn
Tennessee Mom's Five-Year Fight Leads to Historic Kleefstra Syndrome Coverage
For Michelle McDonald, the journey to ensure her son Liam received the care he deserved was a long one—five years of phone calls, rejections, legislative...

Quick Clips: Kleefstra Syndrome in the News

Nola.com: Mother's calling to help others was heard at her child's bedside

Indianapolis Star: Tools break down barriers for young artists with disabilities at Fishers Elementary

Boston Children's Hospital: Cracking the code on Kleefstra syndrome: It takes a community

International Kleefstra Syndrome Family + Scientific Conferences

2022 Virtual Conference

Hosted by IDefine, Kleefstra Syndrome Europe Alliance, The Translational Neuroscience Center at Boston Children’s Hospital, and Radboud University Medical Centre.

2021 Virtual Conference

International Kleefstra Syndrome Family + Scientific Conference

Hosted by IDefine, Boston Children’s Hospital Translational Neuroscience Center, Radboud University Medical Center, and KleefstraSyndrome.org

2022 Conference

International Kleefstra Syndrome Family + Scientific Conference

Hosted by IDefine, Boston Children’s Hospital Translational Neuroscience Center, Radboud University Medical Center, and KleefstraSyndrome.org

The event is free and open to all families, advocates and organizers interested.

Gallery

Organize a Meet Up

Are you interested in organizing a meetup for families in your area? Reach us at community@idefine.org .

Newsletter Archive

Are you looking for newsletter archive? You can access previous newsletters by clicking here.

We would love to hear from you.

If you have any questions feel free to contact us. We will be sure to get back to you as soon as possible.