How anyone (even a shoe) can raise awareness for RARE DiseaseLiz Donohue at Sanford Research:
Last week, I went back to high school with my friend Paola to watch her present a discussion about rare disease to the students. What I heard was a remarkable story about a shoe – Tim’s shoe, a globe-trotting Nike Sneaker made famous by a group of teenage kids.
Like Paola’s presentation, there is more to Tim’s shoe than what meets the eye. Tim’s shoe raises awareness for Multiple System Atrophy (MSA) everywhere it goes as it is collects personal mementos from everyone who sees it. Anywhere Tim’s shoe goes, it is photographed and posted to the Tim’s Shoe Facebook page.
Since arriving in Sioux Falls it has not been further than 50 ft from Pay since she requested it be sent from her friend Rita in Belgium. Pay has taken Tim’s Shoe to schools, research centers, support groups, and medical centers. The goal is to raise awareness that MSA may be under-diagnosed or mis-diagnosed, that there are no treatments, and that although the disease may be rare, that doesn’t make it any less important than a disease that is common – three comments that I hear from patients and families of rare diseases who contact me about the CoRDS Registry.
Pay’s message to the students was simple and clear: It is not RARE when you are affected by a rare disease. Once you are affected by a rare disease, it is no longer rare to you. What Tim’s friends have done with his shoe for MSA is an example to all of us. You don’t need to do something expensive or flashy to be extraordinary and impact people the world over. It is a message to set aside complacency and become active in and around your community. Ignore that voice inside that says “What can I do? I’m only one person!” because Tim’s friends prove that you can impact people, you don’t need the support of an institution, organization or foundation. YOU as an individual can make a difference, no matter your age or the resources you have.
Tim’s shoe was not fancy, expensive, or time-intensive but has been incredibly effective at reaching many people thanks to our digital age of camera phones and social media. Currently Tim’s Shoe has 2000 Facebook followers, numerous YouTube videos, thousands of images, and has reached thousands of people. It is awareness campaigns like Tim’s shoe that open up communication lines to talk about rare diseases, empower patients to share their story, mobilize individuals to raise awareness and funds for research efforts so scientists can work to understand the etiology of these rare diseases and develop better treatments for these devastating conditions.
Tim’s friends did not have many resources, either. However, they all saw how devastating MSA is to individuals and their families and wanted to increase awareness of this devastating condition to help those who are affected by MSA. They used a simple idea, took action and changed the world…. and so can you. With Rare Disease Day coming up, there are many things you can do to raise awareness for any or all of the 7000 rare diseases that affect nearly 1 in 10 Americans.
TOP 5 Easy ways to raise awareness for Rare Diseases:
- Watch the video narrated by Ellie provided by Jeans for Genes or any of the great videos on Global Genes Project in your / your child’s classroom
- Take a photo of your denim jeans and post to Global Genes Project on Facebook. Learn more about Global Genes Project here.
- Use classroom lessons or activities on genetics developed by our friends at SanfordPROMISE and Sanford CoRDS , and the Office of Rare Disease Research.
- Visit NORD and print off a Handprints Across America sign. Take pictures wherever you go and post them to your Facebook wall. We started doing this at Sanford Research and posted to Sanford CoRDS Facebook page– it has been a huge hit!
- Join the conversation on Twitter. Learn more about rare diseases, organizations, and efforts dedicated to rare diseases. Tweet, Tweet and Retweet! To get you started, here are a few to follow: Sanford CoRDS (@SanfordCoRDS), Office of Rare Disease Research (@ORDR), RARE Project (@RAREProject),RareDiseaseDay (@Rarediseaseday), Inspire (@TeamInspire), Marble Road (@MarbleRoad). Don’t forget your hashtags: #raredisease, #1mil4Rare, #RDD2012 . Save the Date 2/29 and Join @SanfordCoRDS for a Twitter Chat at Noon CST.