It was an exciting day in the State of Delaware Tuesday, September 2nd. I had the honor to meet with the Governor of Delaware, Jack Markell, to receive a proclamation declaring September 2015 as Myositis Awareness MONTH in Delaware!
National Myositis Awareness Day, observed September 21st each year, was created through a U.S. House resolution in 2006. Having Delaware declare a month-long Myositis Awareness recognition is more than we could have hoped and we sincerely thank Governor Markell.
During the meeting with the Governor, I had the opportunity to describe how MSU got started, who we are, how far we have come, and the multitude of work still ahead. I was able to provide the Governor with a brief education session, explaining Myositis, its symptoms, side effects, and treatments. I also detailed the difficult diagnostic process that may leave some with no diagnosis and others a misdiagnosis. In sharing my 11-year long polymyositis story with the Governor, I illustrated a real-life example of living with this often-debilitating, neuromuscular, autoimmune disease. Hearing my story helped him to relate.
To kick off Myositis Awareness Month, I presented the Governor with several MSU articles, flyers, and information sheets to further educate him. I was able to offer gifts to him of Myositis Awareness materials including a t-shirt, pens, wristbands, and Myositis information cards. These information cards are valuable tools that can be handed out to friends, family members, and, even, complete strangers to educate about Myositis; giving information about how to contact MSU and learn more.
Even though the Governor has a busy schedule, he took the time to actively listen and to ask questions. He was interested in learning more about Myositis and said he was glad he could help MSU raise awareness through the proclamation. He presented a proclamation for Pain Awareness Month Wednesday.
Talking with Governor Markell made me realize that it is was only 18 months ago that we started to operate as an organization, although unofficially, with an active board (of only two members) while maintaining our closed Facebook support groups and social networks, as well as working to build our website and continuing to write informative, educational articles. At that time we were also preparing our first Myositis Awareness Day events online, scrambling with just two of us, Sandy Block and myself, to get everything together. We were proud to launch our website last year on Myositis Awareness Day, September 21, 2014.
Having the ability to spread awareness and education, whether to your Governor, Mayor, friend, family member, or healthcare provider is an honor that feels great and imparts the knowledge others need to know in order for them to try to understand what living with Myositis is like and why they should support us.
Wish to download the Delaware Proclamation? Click here.
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register