This week, Maryland’s Governor proclaimed June 6 as Transverse Myelitis Awareness Day. This is the second year that the State of Maryland will be celebrating the lives of patients, families and caregivers who are affected by transverse myelitis, neuromyelitis optica, acute disseminated encephalomyelitis and other rare neuro-immune diseases. For many people diagnosed with transverse myelitis, they are literally paralyzed by the virus from the neck down or the waist down, altering their lives forever. This disease and many other neuro-immune diseases are so rare that not even the medical community understands them. Awareness of these diseases is key to better diagnosis and improved outcomes.
To further promote awareness, members of Transverse Myelitis Folks, a Facebook group managed by Kevin D. Weilacher, have been writing to their elected officials to designate a Transverse Myelitis Awareness Day. To date, our members have been successful in signing up a total of thirteen states. Our goal is to one day have a National Transverse Myelitis Awareness Day.
To continue the celebration in Maryland, a 5K Run and 1M Fun Walk and Roll will be held on October 4, 2015. The site of our second Walk-Run-N-Roll is Goucher College in Towson, MD. Registration will start at 8:00 am, and at 9:00 am our State Senator Katherine Klausmeier will sound the starting horn. Last year we raised over $26,000 and this year we hope to exceed that amount. If you are interested in reading more about this event, to donate or to join, follow the link https://www.crowdrise.com/2015-Maryland-Walk-Run-N-Roll.
In the meantime, there is momentum growing for the “Blue Streak Challenge”. For the month of June, wear a streak of blue in your hair and tell people about transverse myelitis and other rare neuro-immune diseases. Join in the fun and post your picture on Facebook, along with all of the others. Whether you donate to the TMA, join the Walk-Run-N-Roll, or participate in the Blue Streak Challenge, please remember to wear your blue on June 6.
~ Laurie Zissimos