Noonan Syndrome Foundation

05/25/2026

🤠Saddle up, Noonan families, it’s time for a rodeo!

They say everything is bigger in Texas… and this conference is bringing BIG Texas energy! 🎉 The 2026 NSF Family Conference is headed to Austin, Texas at the incredible Kalahari Resort & Conventions… and trust us, you do not want to miss this experience!

This year’s speaker lineup is absolutely incredible, featuring brand-new, up-to-date topics presented by a diverse group of specialists dedicated to caring for individuals living with Noonan syndrome. From medical advancements to meaningful discussions and practical guidance, this conference is designed with our families in mind.

Want to see what we mean? Check out the full conference agenda online at www.teamnoonan.org

Our biannual family conferences are so much more than an event - they are an experience for the entire family. Families have the opportunity to seek professional guidance from dedicated specialists from across the country while also connecting with others who truly understand the journey. Many families describe our conferences as feeling like a family reunion, and that sense of belonging is something we work hard to create. Lasting friendships are formed among both children and adults, and the connections made are genuine, meaningful, and simply impossible to replicate.

We’re also excited to offer a series of planned evening events that can be added to your registration, including Guys Night, Ladies Night, Teen Night, and Young Adult Night. These special gatherings provide a unique opportunity to connect, build friendships, and enjoy meaningful time with others in our community. It’s all about establishing and fostering relationships that can last a lifetime!

So dust off your boots and get ready for an unforgettable Texas adventure filled with learning, laughter, and lifelong connections! ❤️ 💙

📣Not registered? There’s still time!! Visit www.teamnoonan.org to register NOW!

⭐️PLEASE NOTE⭐️ We are almost completely sold out of our room block. We have already had to add more rooms to our block twice and will be unable to add anymore should the remaining rooms sell out. They are priced at a highly discounted rate and are available on a first come first serve basis. At the time of this post, less than 10 rooms remain available - DON’T WAIT!

05/15/2026

⭐️Let’s let Ike Barinholtz know that WE ARE WATCHING‼️

It’s time to tune in for tonight’s final episode of celebrity Jeopardy!

05/15/2026

⭐️ JEOPARDY! UPDATE ⭐️

Did you hear the exciting news?!

Actor, comedian, and producer Ike Barinholtz has made it to the FINAL round of Celebrity Jeopardy! after an incredible victory in last night’s semifinal episode. We are thrilled to tune in tonight and cheer him on as he is playing to benefit the NSF. By doing so, he brings national attention to OUR rare disease on one of television’s most iconic stages!

Here’s the details:

🏆 Ike emerged victorious in the semifinals and is now set to return to the Jeopardy! stage for the FINAL round 👏🏼👏🏼👏🏼

⏰ Set a reminder for TONIGHT - FRIDAY, MAY 15th, at 8 PM ET. You can watch the show on your local listings or stream it on Hulu or Peacock.

Ike has a very personal connection to the NSF through his brother, Jon Barinholtz, who is also involved in the entertainment industry. Jon’s son, Dezi, was diagnosed with Noonan syndrome, and since then, Jon has worked closely with the NSF Board of Directors to help raise awareness and support for the Noonan syndrome community.

This is an enormous moment for the NSF and we are filled with gratitude and excitement, and beyond grateful that Ike and Jon are using their platforms to share who WE are 💙❤️

📣Let’s cheer him on from wherever you are! POST in the comments a video or picture of you or your family letting him know that we are watching and pulling for him!

05/14/2026

📣 We’ve been keeping a big, BIG, secret…

The NSF has something VERY exciting to share with our community - and we think you’re really going to like it!

Actor, comedian, writer, and producer Ike Barinholtz is currently competing on Celebrity Jeopardy! on behalf of the Noonan Syndrome Foundation‼️🤯

YES, you read that right…⭐️JEOPARDY!⭐️

AND it gets even better - he’s made it to the SEMI-FINALS‼️ 💃 🕺

Known for his roles in The Mindy Project, Blockers, and The Studio, Ike is bringing his humor, heart, and incredible trivia skills to the famous stage while using his platform to help raise awareness and support for the Noonan Syndrome Foundation!

🌟This is HUGE for our community🌟

Ike has a very personal connection to the NSF through his brother, Jon Barinholtz - also in the entertainment industry and best known for his roles in Superstore and American Auto - whose 4-year-old son, Dezi, has Noonan syndrome. Since Dezi’s diagnosis in late 2023, Jon has worked closely with the Noonan Syndrome Foundation to advance advocacy & awareness efforts, and even recently joined NSF board members on Capitol Hill for Rare Disease Week 2026. Their family’s support and dedication to our community is making a meaningful impact in a BIG way!

Now it’s time to cheer Ike on! Be sure to tune in and check your local listings 🌟TONIGHT🌟 - Thursday, 5/14/26 at 8PM ET, or stream on Hulu or Peacock, to watch him compete for a spot in the finals benefiting ALL individuals living with Noonan syndrome 🎉

Let’s show him some love in the comments and root for on the famous Jeopardy! stage‼️🧬 🥳

Jeopardy!
Celebrity Jeopardy

04/27/2026

🌟Please consider joining our private Facebook group dedicated to everything related to the 2026 Noonan Syndrome Family Conference!

Here you will find more in debt information as it relates specifically to conference. This is a way to get updates quicker, ask questions and connect with other families who will be joining us.

🌟Click the link 👇

https://www.facebook.com/share/g/1CBwpxfQRw/?mibextid=wwXIfr

04/23/2026

⭐️NEW NEWS: Quarterly newsletter has hit your inbox! (make sure to check your spam folder)

Have you subscribed to our quarterly newsletter yet? If not, here’s what you’re missing:

🌟 First to know on community updates
🌟 Important dates
🌟 What’s new in advocacy
🌟 Current fundraising opportunities
🌟 Any open studies
🌟 ….. and more!

Stay in the loop, stay connected!

⭐️ JOIN The Community Loop today! We’d love to have more of our members “in the know” 💫

CLICK HERE: https://www.teamnoonan.org/general-9 -m7zc07ef3

04/23/2026

📣 LIVE WEBINAR

Join us this Sunday, April 26th, as we host our Spring 2026 Webinar!

This online live session will be covering the 2026 NS Family Conference coming up this summer!

President, Tammy Bowers, will be taking and answering your questions! We encourage everyone to join who may be attending or those who are interested in learning more about our biennial conferences.

We are looking forward to connecting with you!

04/20/2026

***Please spread the word and share with your friends and family!***

Natasha Stevens is hosting a fundraiser for the Noonan Syndrome Foundation! If you purchase online from April 28-30 and use the code GIVEBACK-LRYCE, 20% of the sale will be donated to the foundation.

If you like this post and share it, you will be entered into a drawing for a $50 giftcard to Kendra Scott. We appreciate the support of our community members and want to help make each fundraiser hosted as successful as possible!

04/11/2026

Looking for a meaningful (and fun!) way to give back this Mother’s Day season?
Join us for a special fundraiser benefiting the Noonan Syndrome Foundation, hosted by Natasha Stevens in partnership with Kendra Scott!
Visit www.kendrascott.com and use code GIVEBACK-LRYCE at checkout between April 28-30.
20% of all purchases will be donated directly to the foundation ✨

Please share to help us get the word out!

If you have questions, you can post below or email [email protected]

04/11/2026