A Russian river cruise. An anniversary trip to Paris. Lifelong sailor. Spontaneously. While each of our journeys began differently, we are bound together by the need for diagnosis, treatment and support, and the cure for MdDS, the neurological disorder that has affected so many of us.
Our route has always been through raising awareness and support: patient awareness and support; physician awareness; funding to support research. Awareness. Support. Research. Since the day Marilyn Josselyn discovered she had Mal de Débarquement Syndrome in 1998, the MdDS Foundation has worked towards these intertwined goals.
What started as a support group to help patients get their lives back, the MdDS Foundation has grown with each new member, directing nearly $1 million toward research into the cause of MdDS. Finding the cure has always been our ultimate goal, and we won’t stop fighting for it until we know that we have #beatMdDS.
MdDS sufferers carry a weight that few ever have to in their lives.
They do it with a strength and determination that inspires us every day. The inner strength that drives them is exactly what we needed to take our organization and cause to the next level.
We’re excited to continue bringing national attention to MdDS and launch our fresh branding, new website, and explainer video. The animated video tells the MdDS story in a visual and compelling way, and serves as a guide for people who are unfamiliar with MdDS. For patients, we think you’ll like the improved symptoms scale and physician locator.
More than 2,300 of you are in our Facebook MdDS Friends support group alone, and our membership grows every day. Research interest and funding do not match the needs of our community, so we are accelerating efforts to advance our cause. We are more focused than ever.
Our goals
- Support and educate patients and families with this neurological disorder .
- Inform medical professionals about the care and best practices in treatment of MdDS patients.
- Promote basic and clinical research to understand the cause of the disorder.
- Promote clinical studies to improve the diagnosis and treatment of MdDS.
- Manage the largest MdDS clearinghouse worldwide, including information, research and support for patients and medical professionals.
How You Can Help
Share the updated website and explainer video with as many people as you can. Raise awareness using Facebook and Twitter. Explore the website to learn more about MdDS and our community of warriors. Donate to help them get their lives back. We are all warriors, and we need the support of our community to thrive. Thanks for having our back. On behalf of the Foundation, know that we have yours, too.
I have just been diagnosed after a cruise. I have Lupus and bipolar as well which has made it even worse. Feel like I am living in a prison. If anyone has any advice it would be greatly appreciated. Had to go on short term disability which is even harder.
We’re glad you found our website, Melanie, and hope that you will join one of our online support groups. The MdDS Foundation offers two online support groups. One is email-heavy (with full access to conversations online) and the other is on Facebook. More information is on this page: mddsfoundation.org/support/
Both groups have an international membership with a wide variety of experiences and advice to share. Some members also have Lupus or other conditions comorbid, and you will surely find the important support you deserve.
My mum has MdDS which she’s had for many years she would love to speak to other sufferers please can you contact me
The MdDS Foundation offers two online support groups. One is email-heavy (with full access to conversations online) and the other is on Facebook. More information is on this page: mddsfoundation.org/support/
buenas tardes , mi nombre es agustin vivo en buenos aires argentina
me gustaria poder recibir informacion y compartir , pero no he podido incoporarme a vuestros blogs de apoyo y ayuda . Me parece su,amente interesante la labor que estan llevando a cabo , yo estoy diagnosticado con MdDS pero en mi pais no hay profesionales formados para brindar tratamientos adecuados .
Agustín, puede que quiera unirse a nuestro grupo de apoyo en línea de Amigos de MdDS. La traducción de Facebook puede ayudarle a comunicarse con los miembros, muchos de los que están en Europa. http://www.facebook.com/groups/MdDSfriends/ (Traducción español a inglés proporcionada por translate.google.com).
Agustin, you may want to join our MdDS Friends online support group. Facebook’s language translation can help you communicate with members, many who are in Europe. http://www.facebook.com/groups/MdDSfriends/ (English to Spanish translation provided by translate.google.com.)