Breakthrough Summit Report: Turning Takeaways into Action MdDS Foundation 12:07 pm Raising Awareness, Our Impact, Advocacy 11/12/2025 Breakthrough Summit Report: Turning Takeaways into Action 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
NEW Severity Scale Simplifies MdDS Symptom Tracking MdDS Foundation 1:26 pm Advocacy, Patient Registry, I Am Empowered, Announcements 04/03/2025 NEW Severity Scale Simplifies MdDS Symptom Tracking Remarkably simple to use and available as a book mark. 🖨️ Or download and print to start using today. Bridge the communication gap between doctors and patients! 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 Advocacy, Raising Awareness, 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
Looking Back at 2014, Ahead to 2015, and a Call for Volunteers! MdDS Foundation 1:50 pm Raising Awareness, Advocacy 12/23/2014 Looking Back at 2014, Ahead to 2015, and a Call for Volunteers! The MdDS Foundation sincerely thanks all the supporters and volunteers that helped make this a successful year. Without you, these accomplishments would not be possible. Please take a few minutes to read these highlights. Top Media Moments During the Rare Disease Day TweetChat with NORD and ABC, 3,212 tweets were sent with a potential exposure of 28.2 million. Joy Sheerer appeared with Dr. […] Read More
Marilyn Josselyn’s MdDS Story MdDS Foundation 12:00 am Raising Awareness, Our Impact, Advocacy 03/12/2012 Marilyn Josselyn’s MdDS Story Marilyn and Roger Josselyn founded the MdDS Foundation after Marilyn developed Mal de Débarquement Syndrome (MdDS) in 1998. Their efforts have increased awareness of the disorder, growing membership to over 600 worldwide. The foundation aims to promote research, provide support, and educate medical professionals about MdDS diagnosis and treatment. Read More
