Written by Larry Kellerman
Life has a way of defining us rather than vice versa. Each and every day there are innumerable interactions, any of which could have a different outcome. The goal is to be prepared whichever directions those interactions might take, which we all know is easier said than done.
Sometimes those interactions are job-related, but often they occur in our daily lives. These interactions might be positive; meeting a new friend or finding a new place to eat. Others, not so much; seeing an accident or encountering some environmental danger.
Which of the many interactions over time cause the brain of a future MSA patient to start producing or altering the alpha-synuclein being produced, thus causing the neurodegenerative disease multiple system atrophy?
[This is written for a blog post on the Coalition’s web page but is for any and all visitors who come for the first time. Please remember when reading these bulleted points there is a reason for this post; advocacy is an on-going process and each time may help bring one, maybe ten, into the advocacy fold]
- It’s rare – 4 in 100,000 patients will be diagnosed with MSA, 8-9 in 100,000 for those above the ages 40-45.
- It is sporadic – To this point no known cause, genetic or environmental, has been found; to this point it is not known to be hereditary
- No treatment – there is not one treatment that has yet made it past Phase 3 status in the clinical trials process
- No cure – Yep, that’s right! It is a d____ s________.
- How to solve these problems – raise awareness of the disease and monies for the premier funding entity in the MSA community, the Multiple System Atrophy Coalition, and its research grant program.
Raising awareness is a tricky proposition and many advocates have tried multiple methods to bring attention to the disease and sometimes to raise money. There are marathoners, half-marathoners, runners, bicyclists, lemonade stand entrepreneurs, and many others. All help raise awareness and oftentimes money. People wanting to beat this Beast.
Two blues aficionados and one blues artist extraordinaire, offer the BEAT MSA! Fundraiser on October 3, 2019. My wife Colleen, who brainstormed with me this entertainment approach to fundraising, thought raising awareness was best accomplished when people are enjoying themselves. This event, held on World MSA Day, will bring together some of the best in local and national blues artists, good food (included in ticket price) and silent auction items from college basketball programs and blues artists. There will be bands playing, artists soloing, wonderful blues singers singing and guitarists playing. And we can’t forget the skins or the great bassists laying down the beat.
We want it to be an enjoyable and memorable night! Come join us or email me if you have any questions or want to help.
The pictures here show Colleen’s joy at crossing Walt Disney World off her bucket list; this trip in late December 2013 was just two months before our second fundraiser – but that’s another story.
Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer