TED Community Organization

06/19/2026

The comes with challenges, but your lived experience is a powerful tool for change.

Through the portal, we connect patients and care partners directly with researchers who are designing the next generation of healthcare solutions.

For example, right now, you can sign up for a usability study with healthcare research firm Design Science to provide vital feedback on a new medical device.

Qualified adult participants and caregivers will receive a stipend of $200+ for sharing their insights.

Your perspective can directly improve device safety and accessibility for thousands of patients.

🔗 Explore open research opportunities and make your voice heard:

https://tedcommunity.org/thyroid-eye-disease-opportunities/

06/19/2026

🖼️ "When I paint, I don't feel like a TED patient. I feel like myself."-

These are the words we often hear from patients that engage with our TED Art program....

That is the magic we see every single time we gather at the TED ART & Creative Studio.

Living with isn't just a physical battle; it’s an emotional one.

At , we have created a safe, supportive space to heal together through creativity.

💡 Why Join Us? Because you don't need to be an "artist."

We focus on the process of creating, not the perfection of the result.

The best news? It is 100% FREE, and a limited number of ART supply stipends are available!

Come make friends who get it.

👇 CLAIM YOUR FREE SPOT HERE:
https://tedcommunity.org/thyroid-eye-disease-ted-art/

06/17/2026

Years ago, Thyroid Eye Disease ( ) changed far more than my appearance.

My eyes were protruding, swollen, bright red, and painful. Children would sometimes hide behind their parents when they saw me. Some would cry. Friends and associates would look at me with concern. Not sure what to say!

A previous surgeon told me I would never look like myself again.

Then I met Dr. Raymond Douglas M.D., Ph.D.

He looked at me and said he believed he could restore my natural appearance.

And he did.

Alongside Dr. Douglas Sunde, whose early recognition of Graves' disease and years of compassionate care helped guide my journey, they gave me something essential:

Hope.

There would not be a TED Community Organization without these two physicians.

On June 29, I will have the privilege of sitting down with Dr. Raymond Douglas and Dr. Douglas Sunde for a conversation that goes far beyond eyes, treatments, or surgery.

We will talk about identity.
We will talk about loss.
We will talk about healing.
And we will talk about hope.

Because for many people living with thyroid eye disease, the hardest words are often:
"That’s not my face! I don't recognize myself anymore."

Join us for our CONNECTED 2026 Mini Summit:

NOT MY FACE!!
Identity. Loss. Healing. Hope.

- Christine

Learn more:
https://lnkd.in/gtNtV_pU
https://forms.gle/ouZvoEtgvk9HkUAz5

Register:
https://lnkd.in/eExd2K57
https://forms.gle/ouZvoEtgvk9HkUAz5

06/17/2026

The Organization invites you to TED ART & Creative Studio!

A free, twice-monthly virtual space designed specifically for Thyroid Eye Disease patients and advocates.

Led by professional art therapist Sophie and TED patient advocate Jacque, these interactive sessions are all about enjoying self-expression, finding emotional relief, and building camaraderie with others who truly understand the TED journey.

💰 Cost: Completely FREE.

🎨 Supplies: A limited number of art stipends are available for participants!

💻 Where: Completely virtual.... join from the comfort of your home.

Whether you want to paint, journal, or just connect with an amazing community, all are welcome.

✨ Learn more and register now: https://tedcommunity.org/thyroid-eye-disease-ted-art/

06/16/2026

🎨 Reconnect, Unwind, and Heal: Join the TED ART & Creative Studio!

Living with Thyroid Eye Disease ( ) can sometimes feel like a lonely journey, but you don't have to navigate it alone.

Our TED ART & Creative Studio is a warm, lighthearted virtual space where patients and advocates come together twice a month to explore creativity; not for the perfect final product, but for the beautiful, healing process of creation.

Whether it's painting, poetry, photography, or journaling, this is a place to find emotional relief, empowerment, and genuine connection.

✨ The best part? It is 100% FREE to participate.

🖌️ Bonus: A limited number of ART supply stipends are available to help you get started!

When We Meet Virtually:

1st Wednesday of each month: TED Therapeutic Art with Sophie (Art Therapist) at 4pm ET / 3pm CT / 1pm PT.

3rd Saturday of each month: TED ART & Creative Studio with Jacque (TED Patient & Director) at 4pm ET / 3pm CT / 1pm PT.

No artistic background required ... just an open heart ready to try something new.

👉 Secure your spot and sign up for free today: https://tedcommunity.org/thyroid-eye-disease-ted-art/

Disease

TED ART for EVERYONE We believe that creativity is for everyone, regardless of any artistic experience! Our TED ART & Creative Studio virtual space is designed to be fun, lighthearted, and stress-free, where participants can explore a variety of creative activities - such as art, poetry, photography...

06/15/2026

"Not my face!" is a cry we hear too often in the Thyroid Eye Disease .

But there is a path from to NED (No Evidence of Disease), and we want to walk it with you.

Join us for CONNECTED 2026, a global mini-summit designed for patients, by people who understand the clinical and emotional complexity of this condition.

Date: Monday, June 29, 2026

Time: 7pm – 9pm US ET

Featuring: Top experts in the field and real patient stories.

We are looking for 90 advocates and patients to join this specific session. Will you be one of them?

REGISTER HERE: https://forms.gle/ouZvoEtgvk9HkUAz5

06/13/2026

Your story belongs to you. Your choice. Your voice." 🧵✨

We just wrapped up our very first TED Community Storytelling Workshop, and honestly? We are in awe. For four weeks, a remarkable group of patients from around the world came together—not to perform, but to heal.

They proved that storytelling isn’t about stage presence. It’s about making sense of what you’ve been through with Thyroid Eye Disease, finding your voice, and deciding for yourself how to use it.

Whether you want to share your journey publicly one day, or you just want to understand your own experience a little better, you belong here.

Cohort #1 showed us that healing truly begins when we realize we are not alone. Now, it’s your turn.

👉 Registration is officially OPEN for our July Cohort!

https://tedcommunity.org/thyroid-eye-disease-ted-graves-disease-storytelling-workshop-registration/

The details:

✨ 100% Free to participate

💻 Fully virtual (Join from anywhere in the world)

⏰ Four 1-hour sessions

🛡️ Trauma-informed & safe (Zero pressure to share publicly)

If you’ve felt that quiet nudge to explore your story, listen to it.

🔗 Claim your spot today at TEDCommunity.org

06/11/2026

📖 RECLAIMING OUR FACES, REWRITING OUR JOURNEY

When ( ) changes your , it changes so much more than what you see in the mirror.

It impacts your identity, your confidence, and how you connect with the world. But a medical diagnosis doesn't get to write the final chapter of your story.

We are coming together to reclaim our faces and carve out a new pathway forward.

Join us for the Mini-Summit, a dedicated virtual space designed for the TED community to find validation, expert insights, and a shared sense of hope.

Share this link to invite your peers, friends, and loved ones.... and register for the event!

REGISTER HERE: https://forms.gle/ouZvoEtgvk9HkUAz5

🗓️ Save the Date:
When: Monday, June 29, 2026

Time: 4:00 – 6:00 PM PT | 7:00 – 9:00 PM ET (Followed by a 30-minute community afterparty!)

Where: Streaming virtually via Zoom

💡 What We’ll Explore:
The Human Face: Navigating the deep psychological, emotional, and social impacts of facial changes with leading specialists.

Pathways to Healing: Understanding the full spectrum of modern treatments, rehabilitative care, and surgical options to restore both comfort and confidence.

🔗 Your Community is Waiting.
This event is entirely virtual, completely free, and built entirely for you. Let’s rewrite the journey together.

👉 Register Now to Secure Your Spot: https://forms.gle/ouZvoEtgvk9HkUAz5

A profound thank you to our incredible partners and corporate sponsors—Amgen Rare Disease, argenx, Viridian Therapeutics, Kriya, Sling Therapeutics, and Genentech—and to LeapCure for hosting and managing our event platform. Your support makes these vital conversations possible.

06/10/2026

Announcing the CONNECTED 2026 Mini-Summit: Not My Face!

Join the TED Community Organization for our first virtual gathering where we will rewrite our stories and reclaim our lives....

( ) changes more than just your vision, it can deeply impact how you see yourself, how others see you, and how you move through the world...

If you or a loved one has felt the profound physical and emotional shifts of living with TED, YOU ARE NOT ALONE... YOUR STORY MATTERS!

DATE: Monday June 29, 2026
TIME: 4-6 PM US PT, (7-9 PM US ET)
WHERE: Virtual (Hosted via ZOOM by our partners at LeapCure)

Register here: https://forms.gle/ouZvoEtgvk9HkUAz5

05/28/2026

Last night’s TED Storytelling Workshop focused on the power of sharing our stories through video. Leading the conversation was special guest Jason Bellue, CEO of Flying House Media.

My ask for 15 minutes of his time turned into 60-plus. What unfolded was a series of magical moments that became a life-changing message for our rare disease community.

A former producer for Oprah and now an award-winning storyteller and filmmaker, Jason shared from the heart about the importance of authenticity, vulnerability, and human connection in storytelling.

He reminded us that when people living with TED and Graves’ disease courageously tell the hard parts of their journey, the moments that make someone else quietly say “me too,” healing and connection can be felt around the globe.

Thank you, Jason, for inspiring our community to move beyond fear and to see that each of our stories has the power to shatter loneliness and help others find their way to the other side of TED.

Heartfelt appreciation to Margarita R. Ochoa-Maya, MD for co-leading this special session, and to all who joined us for such a meaningful and memorable evening ❤