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08/02/2026

07/30/2026

📣 🇺🇸 The Ehlers-Danlos Society is launching a new U.S. advocacy initiative to bring the voices of the EDS and HSD community directly to Capitol Hill!⁠
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As part of this initiative, in May 2027, The Ehlers-Danlos Society will bring together one advocate from each of the 50 U.S. states in Washington, DC, for the Advocacy Fly-In Summit, a four-day advocacy experience focused on education, storytelling, community building, and meetings with members of Congress and federal agencies. ⁠
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The goal is to ensure the voices and lived experiences of people affected by all types of EDS and HSD are heard to help shape awareness, research priorities, healthcare policy, and future support. ⁠
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We have yet to have applications from Alaska, Hawaii, Iowa, Maine, South Dakota, Montana, Nevada, New Mexico, Oregon, and Utah. We would love to hear from you if you are interested in taking part.⁠

🔗 Learn more and register your interest: https://www.ehlers-danlos.com/advocacy-fly-in-summit-a-collaboration-with-cassidy-associates/

07/30/2026

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Dysautonomia International is pleased to join the Alliance for Connected Care and over 200 other organizations calling on the US Congress to adopt permanent changes to Medicare to provide coverage for virtual/telehealth appointments for over 69 million Americans who rely on Medicare.

Dysautonomia International President Lauren Stiles noted, “there are so few dysautonomia specialists in the US that more than half of our patients are forced to travel over 100 miles from home to access dysautonomia care. Telehealth makes care more accessible for patients living in rural areas or cities that don’t have a dysautonomia specialist, and helps dysautonomia patients who are so ill they are unable to travel.”

Read more about this coalition effort at
https://connectwithcare.org/alliance-leads-more-than-200-health-care-organizations-delivers-telehealth-voters-pledge-to-congress/

WHAT CAN YOU DO?
✅ Call or email your members of Congress and let them know you support the expansion of telehealth coverage overall, and specifically the permanent expansion of telehealth coverage through Medicare. You can find contact info for your members of Congress at https://www.congress.gov/contact-us

✅ Donate to Dysautonomia International to support our non-partisan federal advocacy efforts at www.CureDys.org We serve as the voice of the dysautonomia community on Capitol Hill, making sure elected officials and policy makers understand the needs of our patient community and advocating for legislation, funding decisions, and policy initiatives that benefit the dysautonomia community.

✅ Sign up for our email list to find out about our annual Dysautonomia Advocacy Day events (in person and virtual) and other Action Alerts issued throughout the year. dysautonomiainternational.org/email

07/26/2026

15 seconds of Cutie Commentary for your viewing/listening pleasure.

07/15/2026

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06/27/2026

We’re in 📣 FashionAbility Magazine! 💛✨

Spoonie Threads is officially featured in the July 2026 issue—and we’re still smiling about it!

This piece shares our story, our mission, and how adaptive fashion is showing up in spaces where it’s been overlooked for far too long.

We’d love for you to take a look and flip through the feature here 👉 https://www.flipsnack.com/C7B55E88B7A/fashionability-july-2026

If you’ve ever wondered what adaptive clothing really looks like behind the scenes… this is a great place to start 👀

Tell us what you think after you read it 💬💛

06/17/2026

✨️ Foot drop can be pesky, but Cadense shoes give you pep in your step! They won’t fix foot drop like an AFO, but they help keep your steps light and confident.
♡ Here's how AERIO Women's Sandal-Slide Hybrid can help:

☆ Variable Friction Technology: Designed to glide when your foot brushes the ground and grip under weight for smoother transitions and added confidence while walking.

☆ Easy On & Easy Off: Wide openings and adjustable closures make the AERIO simple to put on, remove, and customize to your fit.

☆ 2-in-1 Wearability: Easily switch between secure sandal mode with the adjustable heel strap or relaxed slide mode for quick convenience.

✨️ Mobility aids are all about helping you keep moving forward—not holding you back. And being Cute while they do it? That's a win-win! ✨

06/07/2026

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