Global Genes is excited to collaborate with Viridian Therapeutics and TED Community Organization through our Corporate Alliance Leadership (CAL) Program to acknowledge and celebrate TED Awareness Week.
Monday, November 13, marks the beginning of TED Awareness Week 2023. This important initiative was established in November 2020 by Prevent Blindness, in collaboration with several organizations, with the goal of increasing education and
understanding of this vision-threatening condition. Today, the ever-growing community is continuing these efforts.
Thyroid Eye Disease (TED) is an autoimmune, inflammatory condition in which the body’s immune system attacks the tissues around and behind the eyes. While the experiences of people affected by TED vary, common symptoms can include:
TED commonly occurs when a person’s thyroid gland is overactive. However, there are rare cases in which TED occurs in people who have normal or underactive thyroids. Approximately 85% of people with TED also have Graves’ disease, which is a different autoimmune condition also caused by an overactive thyroid.
Cynthia Balthazar and her husband at the 2023 Global Genes RARE Advocacy Summit
The Need for Awareness and Education
Because TED is a rare, often difficult-to-diagnose autoimmune condition, TED Awareness Week serves to increase recognition of TED and educate people who are at risk so that they can better recognize the symptoms, know how to find a TED specialist, and feel empowered to get the support and care they deserve.
“The best way to describe living with TED… I call it the ‘Silent Walk.’ It is a walk that only those that have experienced TED know the extensive damage it can cause. This goes beyond our eyes… it goes much deeper… it affects our self-esteem. We can’t even recognize ourselves… it is like our identity has been reinvented.” – Cynthia Baltazar, TED Community Organization Builder
Creating a Community
“The TED Journey can be profoundly isolating and lonely. Especially when one’s face becomes disfigured by bulging eyes and altered facial features.” – Christine Gustafson, executive director of the TED Community Organization
Christine was diagnosed in 2009 and navigated the TED journey alone until she met another person living with TED 12 years later. Seeing a need for a dedicated TED patient advocacy organization that offered education, support and connection inspired her to co-found the TED Community Organization in February 2023 alongside Nancy Hord Patterson, PhD.
Learn more about Christine’s journey
Over the past few months, the TED Community Organization has brought together volunteers, called “TED Builders,” patients, care partners, medical professionals, and individuals who advocate for those dealing with TED. They are a community of people with a shared living experience of TED on a mission to ensure that no one needs to ever walk alone through the arduous and often isolating TED journey.
Since its founding, the TED Community Organization has built a series of free programs to support the needs of its community members. The programming includes a research and resources library, support groups, an online forum, newsletter, TED ART and educational videos and personal story podcasts. Additionally, recognizing the power of
meeting others affected by TED face-to-face, the Organization held its first in-person meet up at the recent Global Genes Rare Advocacy Summit in September.
Help Spread Awareness
The efforts of this collective community are making a difference, but there is much more to do, and many more people affected by TED to reach. Please help us elevate awareness of this condition this TED Awareness Week and all year long. Thank you!
Information was submitted by Viridian Therapeutics and TED Community Organization through the CAL program (Corporate Alliance Leadership) program.
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