Chung-Jansen Syndrome Foundation for Families

08/13/2026

Hi everyone! 💙

Just a quick reminder to sign up for Simons Searchlight and complete your surveys if you haven’t already! Your participation is essential to helping us continue learning more about Chung-Jansen Syndrome (CJS).

The information families share through Simons Searchlight helps researchers better understand CJS, which can ultimately contribute to developing medical guidelines and recommendations to better support our loved ones with CJS. 🧬💙

If you have any questions or need help signing up, please feel free to reach out!

Thank you for being part of this important research effort. Every family’s participation makes a difference! 💙

To every family who connected with us at a recent patient advocacy conference—thank you! 💙

Your continued participation helps move rare disease research forward. Every survey completed and blood sample contributed helps researchers build a better understanding of rare genetic conditions over time.

Keep your research journey going:
• Check your dashboard for outstanding surveys or tasks: bit.ly/Simons_Searchlight_Dashboard
• New to Simons Searchlight? Learn more: bit.ly/Why_Join_Simons_Searchlight

Together, we’re building knowledge that can support research for years to come.

08/11/2026

✨ 2026 CJS Family and Scientific Meeting - Day 2 Recap ✨

Today was all about growing together as a community.

The day began with Smelley’s engaging workshop on Person-Centered Planning. At the same time, many of our families continued their research assessments at 2 Brookline Place, helping to move research on Chung-Jansen Syndrome forward 🧬

As the day continued, families gathered to reconnect, exchange ideas, and enjoy fun activities together, including slime-making and creating worry dolls. Parents also had the opportunity to reflect on their journeys during Restrepo-Henao’s River of Life workshop, sharing stories, challenges, and hopes for the future.

We also explored the power of inclusion through an Adapted Taekwondo session led by Pedro Bedoya Bedoya and Luisa Fernanda Villegas, before giving siblings their own special space to connect, create, and express themselves through art.

We finished the day with a picnic in the park and a calming family yoga session—a wonderful way to slow down, enjoy each other's company, and continue building friendships that will last long after this weekend. 🌳

Thank you to everyone who made Day 2 another memorable day of our first international Chung-Jansen Syndrome Family Meeting!

08/01/2026

✨ 2026 CJS Family and Scientific Meeting - Day 1 Recap ✨

We started the day with Linda Murphy’s engaging Declarative Language Workshop, followed by time to meet one another, share experiences, and begin making special connections within our community. 💜

We then enjoyed a wonderful Story Massage session led by Nadia Elena Garnier Lafferty—a great tool for helping children regulate during challenging moments or unwind and relax before bedtime. 🌙

We ended our first day with Joyce Kik’s presentation on her Parent Folder, accompanied by thoughtful reflection on our Parenting Balance Model ⚖️

Meanwhile, our kids had a wonderful time enjoying arts and crafts activities, getting creative and having fun together! 🎨✨

Though out the day, some of our families were busy at 2 Brookline Place, participating in their research assessments and contributing to our growing understanding of Chung-Jansen Syndrome. 🧬💜

What a wonderful first day filled with learning, connection, research, creativity, and meaningful conversations. We’re so grateful to everyone who joined us and helped make it so special! 💜

07/31/2026

Thank you for joining us, Simons Searchlight!

07/13/2026

🌍 Can’t join us in Boston? You can still be part of the 2026 Chung-Jansen Syndrome Family Scientific Conference!

We are excited to share that the Scientific Conference on Saturday, July 25, will be livestreamed, so families, friends, clinicians, researchers, and supporters from around the world can join us online.

During the conference, you’ll hear the latest scientific updates from researchers studying Chung-Jansen syndrome, learn about current and future research efforts, and hear from families and experts working to improve the lives of individuals with CJS.

This is a pay-what-you-wish ticket, and registration is required so we can send you the viewing link and conference details.

Register here: https://www.zeffy.com/en-US/ticketing/virtual-chung-jansen-syndrome-family-and-scientific-conference--2026

Please feel free to share this with friends, family members, clinicians, therapists, teachers, and anyone who may want to learn more about Chung-Jansen syndrome.

Whether you’re joining from near or far, we’re grateful to have you as part of this community and hope you’ll join us online 💙

06/24/2026

📢 Only 20 Spots Left! 💙

The countdown is on! We are so excited to share that there are now only 20 spots remaining for the CJS Family Meeting & Scientific Conference 2026!

Join us in Boston, MA on July 23–25, 2026 for a special gathering of the Chung-Jansen Syndrome community. This weekend will bring together families, researchers, clinicians, and advocates for:

💙 Connecting with other CJS families
🔬 Learning about the latest research and clinical insights
🧬 Participating in research opportunities and assessments
🤝 Building a stronger, more connected community

If you’re planning to attend, please register by July 1st so we can finalize conference preparations.

Scan the QR code below or use the registration link to reserve your spot!

Link: https://www.zeffy.com/en-US/ticketing/cjs-conference-and-family-meeting

We can’t wait to see you in Boston.

05/25/2026

We’re excited to share a preview of the workshops and activities planned for the Chung-Jansen Syndrome In-Person Conference and Family Meeting, taking place July 23–25, 2026 in Boston, MA.

These sessions were designed to create opportunities for connection, learning, support, and fun for individuals with CJS, siblings, parents, caregivers, and families. From parent workshops and adaptive sports discussions to arts, crafts, dance sessions, and family social activities, we hope this conference becomes a space where families can build meaningful relationships and learn from one another.

Many of these workshops and activities will take place in parallel with research assessments to ensure families, caregivers, and attendees will always have opportunities to engage, connect, and participate throughout the event. Specific schedules and times for both research assessments and workshops will be released closer to the conference.

The main Conference Day on July 25, 2026 will also feature scientific and specialized presentations designed to help families, clinicians, researchers, and advocates learn, connect, and engage in meaningful discussions surrounding Chung-Jansen Syndrome and related topics. Full agenda coming soon.

We can’t wait to bring the community together. 💙

Visit www.chung-jansen.org for registration, updates, and ways to support the event.

04/28/2026

Hi everyone! 💙

As parents and families in this community, we all know how challenging it can be to navigate a rare condition like Chung-Jansen Syndrome. Much of what we have learned has come from supporting one another, sharing experiences, and collaborating to build awareness and conduct research.

Today, I’m sharing this donation flyer for the Chung-Jansen Syndrome Foundation for Families. Our goal is simple but incredibly important: to build stronger connections between families and researchers, expand knowledge about CJS, and ultimately create a better future for our children.

The funds raised will help support:
• The CJS Conference & Family Meeting (July 23rd- 26th, 2026, in Boston, MA), bringing families and experts together. Remember to register if you haven't already!
• Research collaboration and clinical assessments that advance understanding of CJS
• Resources and educational materials for families around the world
• Opportunities for our community to connect and support one another

Every contribution, no matter the size, helps move this work forward and brings us closer to better understanding and care for our kids.

If you’re able, please consider donating or sharing this flyer with friends, family, or your broader network.

Thank you all for continuing to support one another and for being part of this journey.

Direct donations link: https://www.zeffy.com/.../don.../donate-to-change-lives-7447

03/01/2026

In honor of rare disease day, we honor all of you living with a rare disease/Syndrome and the families and people who love you! 💙 We also wanted to take a moment to share the meaning behind our foundation’s logo. A common trait among individuals with Chung-Jansen Syndrome is a slightly curved pinky finger, which we represented in the hand symbol. The DNA strand reflects the small genetic change in the PHIP gene that makes our children uniquely who they are. At the center, the heart represents the deep love for our kids that drives our mission: to empower families through education, connection, and compassion, while supporting science and awareness around Chung-Jansen Syndrome.

02/24/2026

When you first get a new diagnosis, it can be overwhelming for everyone! When you also have limited resources and education for that diagnosis, it makes it that much more difficult to navigate. That’s why we started this Foundation. To raise awareness, to educate and learn from each other, to further the research on the Syndrome…. And most importantly… for those sweet smiles of our loved ones like Susy!! 🥰💙