TED Builders Workshop 2024 ~ Graciously Sponsored by Amgen / Chicago
TED Community Builders Workshop was held on May 22-24, 2024 and included 16 thyroid eye disease patients with two care partners. The event was generously sponsored by Amgen (formerly Horizon Therapeutics), though they allowed us, as TED patients, to have full control over the content and running of the workshop. The agenda was collaborative and included brainstorming ideas for growing our TED Community, storytelling as a way to educate others about thyroid eye disease, a talk with Jeff Todd the CEO & President of Prevent Blindness, a group art project, and participation in a peer support group. On the final day, we learned about patient advocacy from BJ Viau, Director Patient Advocacy @ Amgen Rare Disease. Several of us, with late flights, visited the Chicago Botanical Gardens, a super fun ending to a perfect event.
Enjoy our photo gallery and the participant quotes that follow!
Quotes from In-Person May 2024 TED Builders Workshop
“Thank you so much for everything!! It was a life changing few days. Absolutely incredible :)”
“I’d love to walk into my doctor’s office and share news that will help him understand more about TED.”
“My TED journey has been long and extensive. I have been treated with steroids, Tepezza, orbital decompression, methimazole, and have had my thyroid removed. I believe I can help other patients who might be struggling to make decisions on therapies or surgeries.”
“I wanted to attend so I would feel not alone in my journey.”
“We have so much in common with one another. It made ‘no one walks alone’ real!”
“Loved it all! Aha Moment – learning about ‘Agency’ a term I hadn’t heard before.”
“How exciting so many [with TED] were together. We will never walk alone and it is heartwarming how people connect. This was our 1st, but not our last!”
“I felt definitely cared for – empathy from all.”
“I simply enjoyed being around others who get it.”
“I enjoyed hearing everyone’s stories and how we all were part of the participation of the workshop.”
“I want to be part of a team that works on nutrition for those with TED.”
“I felt a sense of community and something bigger than me. I felt heard and I felt connection.”
“It has been life changing and so, so meaningful.”
TED Community Organization
We Educate
We Support
We Connect
Everyone affected by Thyroid Eye Disease (TED)
You’ll never walk alone.
