Sotos Syndrome Support Association

07/24/2025

Please meet Shannon Sayre-Frodsham, a NEW board member to the SSSA! 💜

Shannon is a proud mom to James “Kaden,” age 7, and they live just outside Overland Park, KS. With a professional background as a Paralegal specializing in Family Law, Insurance Defense, and Medical Malpractice, Shannon later shifted her focus to caregiving and raising her children—a role she cherishes above all. She also brings years of experience in the restaurant and hospitality industry, which reflects her welcoming spirit and strong work ethic.

Her greatest joy comes from being a mother to Kaden and her two daughters, Gabriella and Sophia. Whether it’s supporting her kids in sports and 4H Club, exploring historical and educational museums, traveling together, volunteering with Variety Children's Charity of the Greater Kansas City, or attending Kaden’s many medical appointments, Shannon keeps life full of purpose and adventure.

Now a proud member of SSSA, Shannon is thrilled to be part of this vibrant and supportive community. She describes it as a “second family” and is excited to connect with fellow members and build meaningful relationships.

Welcome to the SSSA Board, Shannon!

07/22/2025

📸 We Want Your Fun Conference Photos! 📸

We’re working on the next SSSA Newsletter, and we’d love to feature YOU!

👉 Send in those FUN conference photos below from our dance, dinners, and more! ⬇📷⬇📷

07/20/2025

Please meet our NEW SSSA Board Member, Melissa Godesky-Rodriguez. Read below to get to know Melissa. 💜

"As the proud mom of Dantae (16) who has Sotos Syndrome, I understand firsthand the challenges, questions, and victories that come with navigating a rare diagnosis. My son’s journey—through multiple diagnoses, special education needs, and a three-year battle with cancer—has shaped who I am as both a parent and an advocate. It’s what drives my commitment to making sure no family walks this path alone.

In addition to being a longtime PTO mom, blood drive sponsor, and active community volunteer, I also serve as an elected trustee on the Bayonne Board of Education in New Jersey. In that role, I advocate for equity, inclusion, and access to resources for all students, including those with disabilities and complex needs.

Professionally, I bring over 15 years of experience leading customer experience, training, operations, and team development for major brands like Party City, Disney Store, Staples, and Dylan’s Candy Bar. I’ve built programs that empower people, improve communication, and create welcoming, inclusive environments—skills I’m excited to bring to the Sotos Syndrome Association.

As a board member, I will provide support anywhere needed whether it is caregiver support, family engagement, inclusive events, or expanding outreach so more families feel connected, informed, and empowered. I’m honored to be part of this mission and passionate about using both my personal and professional experiences to add value to the association."

We welcome you to the board with open arms and are excited to work with you! 💛💜

07/18/2025

We Miss You Already 💜💛

It’s hard to believe it’s already been a week since the 2025 SSSA Conference!

From the meaningful conversations to the powerful connections made, we’re still feeling the warmth, support, and inspiration that filled every moment. To everyone who attended, presented, shared their stories, or simply showed up with open hearts — thank you. You made this gathering unforgettable.

The SSSA community is more than an event — it’s a family. And while the conference may be over, the strength of our connections and the importance of our mission carry on every day.

We already can’t wait to be together again. Until then, stay connected, stay strong, and know that you’re not alone. 💛💜

07/14/2025

💜 Thank you for a beautiful 2025 Conference in Philadelphia! 💛

To our incredible Sotos Syndrome Support Association community — thank you from the bottom of our hearts for making this year’s conference in Philadelphia so meaningful.

From the shared stories to the expert panels, the hugs in the hallway to the laughter at breakfast — every moment reminded us of the strength, compassion, and resilience that makes this community so special.

Whether you were a first-time attendee or a longtime member, your presence helped create a space of learning, support, and connection that will stay with us long after we leave the city.

A huge thank you to our speakers, volunteers, medical professionals, board members, and every family who showed up with open hearts. Together, we continue to build a brighter path for those living with Sotos.

Until we meet again — stay strong, stay connected, and never forget that you're not alone on this journey. 💜💛

Safe travels home!

07/13/2025

🌟 Final Day of the 2025 SSSA Conference – Let's Make it Memorable! 🌟

It’s hard to believe we’re already at the last day of our 2025 conference! We’ve shared so much learning, connection, and support — and we have one more great day ahead 💜

Here’s what’s happening on our final day:

🍽️ 7:30 AM – Family Breakfast
Let’s start the morning together with a relaxed, family-friendly breakfast. A great time to reflect, connect, and fuel up for the day ahead.

🩺 9:00 AM – Doctors Panel
A chance to hear from our amazing medical experts. Bring your questions and learn from the latest insights in Sotos care and research.

🧩 10:00 AM – Member Board Meeting
Open to all members! Come hear about what’s ahead for the association, share your voice, sign up for volunteer opportunities, and more!

🧬 11:00 AM – Sotos Panel
Join us for a heartfelt and informative panel featuring individuals and families impacted by Sotos Syndrome. Their stories inspire us all and we know this is always a favorite part of the conference!

⚕ 1:00–5:00 PM – Individual Doctor Appointments
By appointment only – These one-on-one sessions are a valuable opportunity to speak with a specialist. If you haven’t scheduled yet, please check availability ASAP.

Thank you to everyone who made this conference so special. Let’s finish strong and continue supporting each other every step of the way! 💛

07/12/2025

📣 Calling All 2025 Conference Attendees!

We’re excited for tomorrow’s Sotos Syndrome Panel and Doctors Panel — two of the most anticipated sessions of the event! 🙌

✨ Now’s your chance to get involved:
Have a question you’d like our panelists or doctors to answer? Whether it’s personal, medical, or research-related — we want to hear from you!

🎤 Submit your questions NOW so we can make sure they’re considered during the sessions. Email our SSSA secretary at secretary@sotossyndrome.org with your question.

📅 Deadline: Tonight by 10:00 PM

Let’s make these sessions as informative, inclusive, and impactful as possible. We can’t wait to hear from you!

07/12/2025

https://app.kululu.com/egshdt

2025 SSSA conference attendees - add your photos here for our SSSA album! 💜💛

This album will hold 1️⃣0️⃣0️⃣ photos for 🆓 so upload yours today!!!!

Kululu is a digital Photo Wall which allows you and your guests to share photos & videos LIVE during the event.

07/12/2025

📚✨ Get Ready for a Fun-Filled Day of Learning! ✨📚

SSSA family, we have an exciting day planned just for you at the conference!

🗓 July 12, 2025 Schedule Highlights:

🎤 Keynote Speaker: 8:30 AM – 9:30 AM
Kick off the day with inspiration and insight from our incredible keynote presenter, Jennifer M. Kalish, MD, PhD —you won’t want to miss it!

🧠 Learning Sessions: 9:50 AM – 5:00 PM
Enjoy a variety of engaging and informative sessions tailored for families, caregivers, and individuals affected by Sotos Syndrome. There’s something for everyone!

🍽 Lunch (On Your Own): 12:00 PM – 1:00 PM
Take a break, grab a bite, and connect with new friends or old—whether you head out or pack a lunch, this is your time to recharge.

We can’t wait to learn, grow, and support each other throughout the day. Come ready to ask questions, share stories, and be part of this amazing community!

07/11/2025

07/11/2025

🎉 SSSA Conference Weekend is HERE! 🎉

We’re so excited to welcome you to an unforgettable weekend with our amazing Sotos Syndrome Support Association family 💜

📍 Friday Schedule Highlights – July 11, 2025

🕐 Conference Check-In: 1:00 PM – 5:00 PM
📋 Swing by the registration area to get your materials, badges, and say hello!

🩺 Doctor Appointments: 1:00 PM – 5:00 PM
🕓 Reminder: Appointments must be pre-scheduled.

💃 Welcome Reception: 5:00 PM – 6:00 PM
Join us for light refreshments, hugs, and happy reunions!

🎶 Dinner, Dancing & Silent Auction: 6:00 PM – 10:00 PM
Let’s celebrate the start of our weekend with a night full of fun, music, and community—all while supporting the cause through our silent auction!

✨ We can’t wait to see your smiles, hear your stories, and dance the night away together. Let’s make it a night to remember!

07/10/2025

💜 SSSA Family – Conference Weekend begins TOMORROW! 💛

We’re so excited to welcome our SSSA community to a weekend full of connection, learning, and support!

Check in begins at 1pm, Friday, July 11, 2025.

Here’s what you can look forward to:
✨ Inspiring keynote speakers
🧬 Sessions with medical experts and specialists
🎨 Fun activities for kids and teens
🤝 Time to connect with others who truly understand the journey

Whether you're attending for the first time or are a returning member, this weekend is all about you and your family. Let’s make memories, share stories, and support one another.

📲 Conference Info & Schedule: https://www.sotossyndrome.org/conference/agenda/

Drop a 💜 in the comments if you're attending and share where you are coming from—we can't wait to see you there!