Our Friendraiser Store MdDS Foundation 8:00 am Raising Awareness 6.13.2013 Our Friendraiser Store In case you are not familiar, a friendraiser is an event hosted by a foundation or its board members to cultivate donors by having current supporters bring a friend. The event is typically a closed, private party with good drink, good food, and even entertainment. But we’re not typical, are we? Of course we enjoy, good […] Read More
How Are You Celebrating Being Rare? MdDS Foundation 3:53 pm Raising Awareness 1.29.2013 How Are You Celebrating Being Rare? The MdDS Foundation and our partner in advocacy, the National Organization for Rare Disorders (NORD), is celebrating Rare Disease Day on February 28, 2013. Last year we worked to create advocacy on the state level, with many Governors’ Proclamations of Rare Disease Day. This year NORD suggests some new ideas on how you can celebrate being rare. […] Read More
Global Genes Project Features MdDS Patient Story MdDS Foundation 12:46 pm Raising Awareness, Faces of MdDS 11.19.2012 Global Genes Project Features MdDS Patient Story Although the role of genetics is not yet understood, the Global Genes Project joins the MdDS Foundation in advocating for those suffering with MdDS. They’ve published the story of Mike Nelson. Rare among the rare, Mike is one of our growing number of male members. You can read his story here: http://globalgenes.org/rare-disease-mal-de-debarquement-syndrome-often-affects-quality-of-life/ Read More
Rock’n Stroll 2012 MdDS Foundation 4:24 pm Raising Awareness 10.1.2012 Rock’n Stroll 2012 The inaugural Walk Series and Friendraiser successfully raised over $7,500 for MdDS education and research, thanks to sponsors, walkers, and cyberwalkers. Participation spanned several states. Enjoy the photos! Read More
More Cities Added to the MdDS Walk Series MdDS Foundation 3:21 pm Raising Awareness 8.29.2012 More Cities Added to the MdDS Walk Series AWARENESS WALK UPDATE: Last week we added 8 pins to the Rock’n Stroll map, and we now have walkers and cyberwalkers in 3 countries. What exactly is a cyberwalker, you ask? [googlemaps https://maps.google.com/maps/ms?msa=0&msid=207449832681204037117.0004c4918b83bd2acbc0f&ie=UTF8&t=m&ll=43.052834,-87.912598&spn=4.013885,9.338379&z=6&output=embed&w=425&h=250] At it’s simplest, a cyberwalker is anyone who wants to support the walk series but isn’t able to join one of our […] Read More
Where’s Your Pin? MdDS Foundation 10:26 am Raising Awareness 8.23.2012 Where’s Your Pin? Every time someone registers for the Rock’n Stroll, a pin goes up. Where’s Yours? [googlemaps https://maps.google.com/maps/ms?msa=0&msid=207449832681204037117.0004c4918b83bd2acbc0f&ie=UTF8&t=m&ll=44.715514,-57.128906&spn=37.420794,123.046875&z=3&output=embed&w=700&h=300] Read More
Registration Opened for 2012 Awareness Walk MdDS Foundation 12:01 am Raising Awareness, Announcements 8.2.2012 Registration Opened for 2012 Awareness Walk Save the date. We’re ready to Rock’n Stroll on September 23! This year the Walk Series includes awareness events in Florida, Colorado, Texas, and even a half-marathon in New York. If you’re ready to join the walk to stop the Rock’n, just click on the orange button. If you need a little more information, keep […] Read More
Wear That You Care MdDS Foundation 3:03 pm Raising Awareness 7.27.2012 Wear That You Care Cause bracelets have been available for breast cancer and heart disease but there has never been a unifying symbol, color or bracelet that represents the rare and genetic disease community. That’s why the Global Genes Project started the 7,000 Bracelets for Hope™ campaign.They collect unique bracelets made by jewelry designers, artists, crafters, church groups, girl […] Read More
