Edforeds4.org

05/27/2026

📣 Updated Golf Tournament Timing! ⛳
Please note an updated schedule for the upcoming EdforEDS4.org Golf Tournament:

📝 Registration begins: 6:45 AM
🏌️ Tournament start time: 7:30 AM

All event flyers have been updated accordingly. We can’t wait to see everyone for a great day supporting the EDS community! 🦓

tournament

05/25/2026

As Memorial Day comes to a close, all of us at EDforEDS4.org want to extend our gratitude to those who served, sacrificed, and to the families who carry their legacy every day.

Today — and every day — we remember with appreciation and respect.

Thank you for your service. 🇺🇸❤️🤍💙

05/24/2026

🖤💜 THE ROAD AWAITS 💜🖤

September 13th, 2026

Rev your engines and ride for something bigger.

The First Annual EDforEDS4.org Poker Run is coming — bringing together motorcycles, music, prizes, community, and awareness for vascular Ehlers-Danlos syndrome (EDS4).

🏍️ Ride.
♠️ Play.
🎵 Gather.
💜 Raise awareness.

SAVE THE DATE!

Charlton Beagle Club | Charlton, MA

05/10/2026

Happy Mother’s Day to all the incredible moms, grandmothers, bonus moms, caregivers, and mother figures in our EDS community and beyond. 💜

Today we celebrate the strength, love, advocacy, and endless support you give every single day — often while carrying challenges no one else can see. Thank you for all the ways you show up for your families and for each other.

Wishing you a day filled with love, gentleness, and appreciation. 🌸
— The team at EdforEDS4.org

05/02/2026

May is EDS Awareness Month 💜

This month is about more than awareness—it’s about community, validation, and hope.

For those living with Ehlers-Danlos Syndrome, every day can look “normal” on the outside while feeling anything but on the inside. That’s why awareness matters.

We see you. We believe you. And we’re walking this path together.

01/01/2026

As we step into a brand new year, we want to wish our entire community health, steadiness, and moments of joy—wherever you’re starting from. Thank you so much for helping us exceed our fundraising goal in 2025!

Progress tracker: https://donate.rarediseases.org/campaign/2025-fundraising-for-nord-by-ed-for-eds4/c690908

We’re also excited to share a “save the dates” look at our 2026 events, which help support education, awareness, and meaningful connection around our mission of bringing awareness to EDS4:

📌 Co****le Tournament – Saturday, June 6, 2026
⛳ 3rd Annual Golf Tournament – Sunday, August 23, 2026
🏍️ Poker Run – Sunday, September 13, 2026

More details will be shared as each event approaches. For now, we’re simply grateful to walk into 2026 with this community beside us.

Thank you for being here—and here’s to a healthy, hopeful year ahead 💙

This team of runners and community partners are supporting NORD’s mission to drive public policy, accelerate research and improve care for people living with rare diseases.