On March 1, 2013 a Flag of the United States of America was flown over the U.S. Capital in honor of Multiple System Atrophy Awareness Month. The request to fly the flag was made by the Honorable Richard Burr, United States Senator from North Carolina.
It was a very easy process and it was a great way to kick off MSA Awareness Month. In fact, anybody can contact their US Senator via their websites and request a flag to be flown over the U.S. Capital.
Today is March 21st – 10 Days Left to Contribute Your Voice
In the United States, there are only about 13,000 diagnosed patients with multiple system atrophy. That is 13,000 too many, but it points out the need for as many MSA patients, caregivers, family and friends, healthcare providers and rare disease advocates as possible to contribute their voices to make noise about the desperate need to find a cause and a cure for MSA. Here are some ideas on how to contribute your voice to MSA Awareness Month:
- Like the MSA Coalition and other MSA groups on Facebook and “like” our posts so your connections can see posts about MSA. Even better, “share” our posts directly on your own Facebook pages.
- Join Twitter and create a user name with MSA in it. For example @MSACoalition. Use the search and discussion tools to find tweets about #MultipleSystemAtrophy and retweet them to your followers.
- Most important – Write letters to your members of Congress (U.S. Representatives and Senators) to let them know you are their constituent and that you suffer from multiple system atrophy. Be sure to include the following in your letter:
- Your full address so they know they represent you
- Explain what multiple system atrophy is (a rare and fatal neurodegenerative disease) and provide detail on how it is impacting your life
- Explain the challenges in qualifying for disability insurance
- Emphasis that there is no known cause or cure and that the NIH needs more money dedicated to rare disease research
- Ask them to push the FDA to use existing protocols to approve orphan drugs quickly so the pharmaceutical industry and investors will become better motivated to research medications for rare diseases.
- Buy and wear MSA bracelets
- Post comments on blogs like this one to help add content and to show there is an active MSA community
- Start a fundraiser on First Giving to support the Multiple System Atrophy Coalition
As individuals we can make a difference, but together we can be much strong!