Breakthrough Summit Report: Turning Takeaways into Action MdDS Foundation 12:07 pm Raising Awareness, Our Impact, Advocacy, Patient Registry, I Am Empowered 11.12.2025 Breakthrough Summit Report: Turning Takeaways into Action Conference Success ✅ We met with top IAMRARE® Patient Registry Leaders to talk strategy and open up new opportunities. More than attending an annual meeting, making in-person connections is how we amplify the MdDS community’s voice and create lasting positive change. Want to know what this means for you? Read the full post now! Read More
Dear Reader, MdDS Foundation 8:04 pm Raising Awareness, Faces of MdDS 6.7.2025 Dear Reader, Join us as we raise awareness, so more people walking around undiagnosed or misdiagnosed may find support in our community. If you win the zebra, take it everywhere you go. Snap photos. And tell everyone your MdDS Zebra Tale! Read More
Part 2: The 2024 Breakthrough Summit, Tote & PAOs MdDS Foundation 10:06 am Raising Awareness, Advocacy, Research 11.22.2024 Part 2: The 2024 Breakthrough Summit, Tote & PAOs Summit Recap: Over the course of the three-day event, I met many other Patient Advocacy Organizations with shared challenges and successes. Read More
Alone we are Rare. Together we are Strong. MdDS Foundation 9:00 am Raising Awareness, Advocacy, Faces of MdDS, Research 11.16.2024 Alone we are Rare. Together we are Strong. The majority of rare disorder patients do not have an Advocacy Organization representing them. Read how the MdDS Foundation is advocating for you, today on the blog. Read More
A Journey Through Uncharted Waters: My Life with MdDS a Contributing Writer 9:52 am art, Faces of MdDS 11.9.2024 A Journey Through Uncharted Waters: My Life with MdDS Eleven years ago, Sylvia Hemby’s joyful vacation in Hawaii turned into a challenging experience due to her diagnosis of Mal de Débarquement Syndrome (MdDS). The disorder caused a persistent sense of rocking. Yet, she found solace in creating seashell art, channeling her struggles into beauty and resilience, representing her journey of growth. Read More
June 2024 Newsletter MdDS Foundation 11:59 am Our Impact, Raising Awareness, Announcements, Faces of MdDS, Research, News 7.8.2024 June 2024 Newsletter Exciting news you can use! This edition is filled with important information that you definitely want to read. Read More
“MdDS – the struggle is real” by Dawn a Contributing Writer 12:23 pm Raising Awareness, Faces of MdDS 6.30.2024 “MdDS – the struggle is real” by Dawn “I hope to help people understand how debilitating MdDS is and how frustrating it is to look fine on the outside but silently suffer.” ~Dawn #thestruggleisreal Read More
I’m not Dawn yet! a Contributing Writer 12:22 pm Raising Awareness, Faces of MdDS 6.22.2024 I’m not Dawn yet! For some, MdDS is a cloak of darkness that settles over them. But Dawn McGhee is helping people who struggle like herself, to find light in the darkness. Read More
