CdLS Foundation

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CdLS Foundation This page is where people can connect with each other and the CdLS Foundation staff. We serve the United States in our office, but those outside of the U.S.

The CdLS Foundation provides a host of services that educate and unite families touched by this little-known genetic syndrome. Each day, we enlist the support of hundreds of dedicated volunteers throughout the United States, as well as the expertise of professionals from the fields of genetics, medicine, education, psychiatry, and more, in our effort toward advancing both societal and scientific understanding of CdLS. can find more information and contacts by visiting http://www.cdlsworld.org/xwiki/bin/view/Main/WebHome. The CdLS Foundation does not discriminate based on the basis of race, color, religion, disability, national origin, genetic information, s*x (including pregnancy), age, s*xual orientation, gender (including gender identity and expression), marital status, protected veterans status, citizenship status or any other characteristic protected by applicable law.

Good luck to Team CdLS running the Baltimore Running Festival today! 💜We are honored to have you supporting your loved o...
10/17/2026

Good luck to Team CdLS running the Baltimore Running Festival today! 💜
We are honored to have you supporting your loved ones and the whole CdLS community! Go team!
If you are local to Baltimore, cheer on our team, and look for the Team CdLS flags!
Share all your race-day pics here - http://CdLSFoundation.memfox.io/teamcdlsbalt

💙 Progress for One. Hope for Many.Today, we celebrate a remarkable milestone for the rare disease community!The FDA’s ap...
10/16/2026

💙 Progress for One. Hope for Many.

Today, we celebrate a remarkable milestone for the rare disease community!

The FDA’s approval of the first gene therapy for children with Sanfilippo syndrome type A represents years of determination, collaboration, and unwavering hope from families, researchers, clinicians, and advocates.

While gene therapy is not currently a treatment option for Cornelia de Lange syndrome (CdLS), breakthroughs like this remind us that scientific progress is possible—and that advances in one rare disease can help pave the way for discoveries in others.

At the CdLS Foundation, we believe that every step forward in rare disease research matters. We celebrate alongside the Sanfilippo community and remain committed to advancing research, improving care, and creating a brighter future for individuals with CdLS and their families.

💙 Because progress for one rare disease community brings hope to us all.

Read more here - https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapy-pediatric-patients-sanfilippo-syndrome-type

10/15/2026

It's almost Halloween!
Comment how your family likes to celebrate! Do you dress up? Do you trick-or-treat, or trunk-or-treat?
We want to hear from you! 🔽

We asked - and you answered! 💜"There are so many times that Izaak surprises us, but one that really stands out to me hap...
10/15/2026

We asked - and you answered! 💜

"There are so many times that Izaak surprises us, but one that really stands out to me happened recently in OT. He was cutting a circle! A circle! And he was holding the paper with one hand and the scissors with the other.

He’s been working on this for years, so seeing him actually do it was just… wow!! It might seem like such a small thing, but for Izaak, it was a huge thing.

It’s moments like that, that remind us how hard he works and how much progress he really is making. Those are the moments that make you stop and think, “Wow, look at you, buddy.”
- Kavina, Izzak's mom

Comment your own answer to this question in the comments, or message us!
Tell us about a time your loved one with CdLS surprised you. 🔽

Missed our Back-to-School Kickoff? No worries! You can still catch all the sessions and learn from the experts, hear fro...
10/14/2026

Missed our Back-to-School Kickoff? No worries! You can still catch all the sessions and learn from the experts, hear from other families, and explore helpful resources, all at your own pace.

Register now to access the sessions and watch whenever it works best for you!

Register and start watching: https://bit.ly/cdlsbacktoschool2026

You asked, we answered!You Asked: My child has been treated for acid reflux with medications since birth. We have been m...
10/13/2026

You asked, we answered!

You Asked: My child has been treated for acid reflux with medications since birth. We have been managing her reflux ok until about two years ago, when she started to have recurring pneumonia, which the doctors treating her believe is due to aspiration while reflux. Is it time to consider a surgical solution? If yes, which one is the most recommended? Thank you for your help.
We Answered: Nissen or Toupet fundoplication are two popular reflux surgeries. Toupet is associated with less post-op gas/bloat or dysphasia. They would need to talk with a surgeon to discuss the risks and benefits of the surgical option.
If the patient is able to cooperate, an esophageal manometry and 24-hour pH study (they are awake for this) help guide which surgical option is best. If the patient cannot cooperate with that, I would recommend pre-op EGD with pH BRAVo study.

Legal Disclaimer: Please take note that the CdLS Foundation’s Ask the Expert service is comprised of volunteer professionals in various areas of focus. Response times may vary, and a response is not guaranteed. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.

Do you have a question for our experts in CdLS? Please submit it here: https://www.cdlsusa.org/submit-question/

Today we honor the rich cultural heritage, traditions, and contributions of our diverse nation. Wishing you all a day fi...
10/12/2026

Today we honor the rich cultural heritage, traditions, and contributions of our diverse nation. Wishing you all a day filled with joy, gratitude, and festive celebrations with loved ones!

Good luck to Team CdLS running the Chicago Marathon today! 💜We are honored to have you supporting your loved ones and th...
10/11/2026

Good luck to Team CdLS running the Chicago Marathon today! 💜
We are honored to have you supporting your loved ones and the whole CdLS community! Go team!
If you are local to Chicago, cheer on our team, look for the frog umbrellas!
Share all your race-day pics here - http://CdLSFoundation.memfox.io/teamcdlschicago

🌍💚 Happy World Mental Health Day! Embrace self-care, share love, and check in on each other.Share your journey as a care...
10/10/2026

🌍💚 Happy World Mental Health Day! Embrace self-care, share love, and check in on each other.
Share your journey as a caregiver in the link. Let's support one another! 💜
http://CdLSFoundation.memfox.io/cdlsstory

MISSION:POSSIBLE starts with a simple idea: families should have a voice in the future of CdLS research. Families know t...
10/09/2026

MISSION:POSSIBLE starts with a simple idea: families should have a voice in the future of CdLS research.
Families know the questions that matter most. Researchers have the expertise to help find answers. And together, we can help move CdLS research forward.

On GivingTuesday (12/1), support the CdLS Foundation and MISSION:POSSIBLE, an effort to turn family knowledge and priorities into scientific progress.
From improving care today to exploring treatments for tomorrow, your support helps make what once seemed impossible feel a little more possible.

Join us this GivingTuesday and help make the future of CdLS research possible.
Stay tuned for ways to donate and support MISSION:POSSIBLE 💜

Address

30 Tower Lane, Suite 400
Avon, CT
06001

Opening Hours

Monday 8:30am - 5pm
Tuesday 8:30am - 5pm
Wednesday 8:30am - 5pm
Thursday 8:30am - 5pm
Friday 8:30am - 5pm

Telephone

+18007532357

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