IDefine

IDefine exists to provide a community for families affected by Kleefstra Syndrome

09/11/2026

With coming up on September 17, there are so many ways to help raise awareness and show your support for the (KS) community.

Whether you wear your favorite purple shirt, share your family’s story, or simply start a conversation about KS, every action can help more people learn about the community and momentum behind KS research. You can also download official KS Awareness Day graphics to post on social media here: https://drive.google.com/drive/folders/1wObWirRVStgm6OEotNhPMmVIDz2kjYZy, and a special customizable graphic to personalize with your own photos: https://canva.link/kw1gie2qh38e8x2

Looking to take your support even further? If you have an idea for a fundraiser or special event, we’d love to help bring it to life. From birthday fundraisers and walks to golf outings and bake sales, our team can help you build a campaign page, create promotional materials, and spread the word. Send us an email at [email protected] and we’ll help you start planning!

To make a donation that directly supports our work to fund KS research, build centers of excellence, bring our community together, and more, visit: https://idefine.networkforgood.com/projects/198829-donate-now-to-support-idefine

09/09/2026

: (KS) is a rare genetic disease that can affect development, speech, muscle tone, and many aspects of daily life.

Every person with KS is unique, and families may experience a wide range of symptoms, challenges, and milestones. As we look ahead to on September 17, we’re helping more people understand KS while highlighting the research progress giving our community hope for the future.

Learn more and help spread the word about research underway across the KS community, from potential gene and RNA therapies to AI-powered drug repurposing and more: https://www.idefine.org/category/cso-corner/

You can also find more information about how your donation can directly support our work to build a brighter future for the KS community: https://idefine.networkforgood.com/projects/198829-donate-now-to-support-idefine

09/08/2026

Don’t miss Karaoke for Kleefstra, this Saturday, September 12, at Allisonville Home & Garden!

Whether you’re taking the stage or cheering on friends from the audience, every ticket purchased helps support our mission to accelerate research and bring us closer to future treatments for (KS). As we approach next week, this is a great way to get involved and support the community.

Can’t make it? You can still support this important cause by making a donation. Register or donate here: https://idefine.networkforgood.com/events/102286-2026-karaoke-for-kleefstra

09/04/2026

As we approach on September 17, we invite you to register for the Kleefstra Syndrome Worldwide Map, a space for our growing community to be seen, connected, and counted.

By showing where individuals living with (KS) are located around the world, the map helps demonstrate the reach and growth of our community over time. It also creates more opportunities for families to meet one another, strengthen connections across the global KS community, and build greater awareness of KS.

Add your family to the map and help us grow this global connection: https://www.kleefstraworldmap.org/

09/02/2026

As we reflect on the 2026 Kleefstra Syndrome Family Conference + Scientific Summit, we want to recognize everyone who helped make this year’s event a success.

Thank you to the individuals and families from across the (KS) community who participated, asked thoughtful questions, and shared their personal experiences. The resilience of this community continues to drive our work to bring us one step closer to the first treatment option for people living with KS.

Thank you to our expert speakers for providing important information on research, clinical care, and advocacy, as well as practical insights to help plan for the future and manage key issues impacting KS families.

And thank you to our volunteers for managing the many details required to keep the conference organized and running smoothly.

For those who attended, we welcome you to share your feedback with us using the following form: https://docs.google.com/forms/d/e/1FAIpQLSeCgbDhQEMvBOccScJyzMVlRB54eMV6hl8hajv-hcEnSvt7pA/viewform

Your insights will play an important role in helping us improve the conference experience for future events.

Couldn’t make it to this year’s conference in person? We’re excited to share that 2026 Family Conference session recordings are available to view on demand via our YouTube channel here: https://www.youtube.com/playlist?list=PLZIOTHYZv08Y

08/28/2026

In case you missed it: In our CSO Corner blog, IDefine Chief Scientific Officer Eric Scheeff, PhD, discusses how our research collaboration with Johns Hopkins University (JHU) and COMBINEDBrain, alongside a consortium of advocacy organizations, aims to study a potential new treatment approach using a novel RNA-based therapeutic platform that could apply to several conditions.

Eric explains how this approach complements our existing therapeutic development efforts by exploring a different strategy to “turn up the volume” on the remaining functional copy of the gene. Led by Jeff Coller, PhD, professor at JHU, this program reflects our commitment to pursuing multiple scientific methods that may one day lead to targeted therapies for .

Read the full blog post to learn more about this exciting collaboration: https://www.idefine.org/cso-corner-volume-17-turning-up-the-volume-on-ehmt1-part-2/

COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental

08/27/2026

Save the date: the 4th Annual Karaoke for Kleefstra is coming up on September 12! We are proud to host this annual event, bringing the community together at Allisonville Home & Garden for an evening of fun and fundraising in support of (KS) research.

If you are unable to attend, you can still help move research forward by making a donation toward this year’s fundraising goal.

Tickets are limited! Learn more and register here: https://idefine.networkforgood.com/events/102286-2026-karaoke-for-kleefstra

08/26/2026

Finding a healthcare provider who is already familiar with (KS) can make all the difference. That’s why we’re working to build the KS Healthcare Provider Directory, a community resource to help connect families with healthcare professionals who have experience caring for people living with KS.

If your family has coordinated with a clinician or specialist you trust, we’d love to hear from you. Submit their information through our provider recommendation form, and our team will use these details to build a comprehensive list of experienced healthcare professionals who understand how to best support KS families: https://docs.google.com/forms/d/1DmWeCOYLKzadu-po-zidrhKozW-KeLUbUVJUaE35fyE/edit

Together, we can help make it easier for families to access the care they need.

08/25/2026

We’re thrilled to share that we now have additional spots available to our (KS) community to help test the upgraded AI Advocate from Citizen Health, called Ari.

Ari is an AI health companion designed to do more than answer questions. It can help take on time-consuming tasks such as:

📊Symptom tracking
🛡️Appealing a denial
📅Spotting what’s coming
🔬Reading new labs

The more KS families who try Ari and share their feedback, the more Citizen Health can learn about what our community needs — and the more useful Ari can become for everyone.

Sign up here to get started: https://www.citizen.health/ari/kleefstra-syndrome

08/24/2026

Education is a central part of the program at our Family Conference, but making time to have fun and connect with other members of the community is just as important. A lively dinner reception, a spectacular magic show, and plenty of opportunities to meet and mingle gave families time to relax, catch up, and form new connections.

And if you attended this year’s conference, we’d love to hear about your experience! You can share your thoughts using the feedback form available here: https://docs.google.com/forms/d/e/1FAIpQLSeCgbDhQEMvBOccScJyzMVlRB54eMV6hl8hajv-hcEnSvt7pA/viewform

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http://www.IDefine.org/

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