Sky, Sea & Me MdDS Foundation 8:00 am Raising Awareness, art, Faces of MdDS 04/24/2015 Sky, Sea & Me Since Oct 2014, I feel stuck in a space somewhere between the sky and the sea. As is the case for most of us, MdDS invaded my life once my feet touched the ground after a one-week cruise. Since the variation and intensity of my symptoms continue to be as unpredictable as the weather, I […] 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
Finally Available! Awareness Bracelets for MdDS MdDS Foundation 6:34 pm Raising Awareness 12/01/2014 Finally Available! Awareness Bracelets for MdDS With the help of some great volunteers, there is now an MdDS awareness bracelet! It’s been an interesting learning experience, but the design, production and US shipping hurdles have all been figured out, and we are now ready to roll them out to the public!* To receive a Stop the Rock! bracelet, simply make a donation of $20 […] Read More
MdDS: an Infographic and letter to share MdDS Foundation 7:00 am Raising Awareness 07/16/2014 MdDS: an Infographic and letter to share Dear Friends and Family, I am living with a rare condition with an interesting name, Mal de Débarquement Syndrome (MdDS). What is that you ask? Mal de Débarquement Syndrome or Disembarkment Syndrome is a neurological disorder that most often develops following an ocean cruise. Less often, a perceived sense of motion follows air, train, or auto […] Read More
Our rare disorder with the strange French name MdDS Foundation 6:30 am Raising Awareness 06/04/2014 Our rare disorder with the strange French name June is MdDS Awareness Month, so the Foundation and its volunteers have been working doubly hard to spread awareness of Mal de Débarquement Syndrome. Our rare disorder with the strange French name is now recognized by organizations such as the NIH, NORD and, just recently, the Rare Disease United Foundation. But we need to work […] Read More
Run to Raise Awareness in the UK MdDS Foundation 6:00 am Raising Awareness 03/24/2014 Run to Raise Awareness in the UK Please leave a comment to congratulate and thank Hayley, for carrying the banner 21.1 kilometers or 13.1 miles, in her run to raise awareness of MdDS. Hayley completed the half-marathon in her MdDS shirt and raised over $1,300 for research. She ran in honor of Jane, the UK representative for the MdDS Foundation. Not only […] Read More
It’s Rare Disease Day! Tell us the challenges you face having a #RareDisorder MdDS Foundation 6:00 am Raising Awareness 02/28/2014 It’s Rare Disease Day! Tell us the challenges you face having a #RareDisorder When we talk about the statistics, that 1-in-10 Americans has a rare disease, of which there are about 7,000, what does that mean? To you? While it’s true that rare diseases and disorders affect 30 million in the US alone, to you it probably meant you spent a lot of money, visiting doctor after doctor, […] Read More
One Epic Run to Raise Awareness MdDS Foundation 11:20 pm Raising Awareness 11/06/2013 One Epic Run to Raise Awareness December 7–8, Doug, an MdDSer since March of 2013, will run a 24-hour ultramarathon to raise awareness of MdDS. Doug has completed over 30 ultramarathons but he says, “Since developing MdDS it has been a challenge to train like I should. I consider myself blessed to be able to function at work and continue running. I KNOW […] Read More
