Written by Larry Kellerman:
For many people fall is the best time of year. Colors stand out more with brown and a multitude of bright colors adorning trees, yards and sidewalks. The sounds of college or NFL football often wafts across the yard, and dads and sons – and maybe even grandsons – play touch or flag football in the yard. All in all a welcome respite beween the increasingly hot summers and increasingly cold winters.
It is also a great time of the year for bringing awareness to the disease multiple system atrophy (MSA). October 3rd specifically, a day started by a wonderful lady who lost her husband to the disease on that day almost a decade ago. She envisioned a day when people affected by MSA, whether a caregiver, a friend or a family member, in every time zone in the world would be able to light a candle at a specific time and walk, job, run, ride a bike, swim one mile at least. After doing so they can enter their names and distances in a web-based spreadsheet at www.world-msa-day.org, check out how far people have walked in previous years and get motivated by the writings and songs highlighted.
In 2014, the second year my wife and I knew of this day and first time we decided I’d run – she was totally wheelchair bound by that time – the day became wet and cloudy. By the time I wanted to run it was raining pretty good. What did we do? We looked up how long the average person must run in place to reach one mile and the general consensus seemed ten minutes. So Colleen began timing me with her phone while I ran around inside the house for ten minutes. You don’t have to be fancy or with a large group; it’s whatever floats your boat!
This year Peoria on October 3rd will be much different. A simple 8 inch snow fall on the day of our event last year told us we’d rather have it on a significant day. Voila! October 3rd. And thus will soon be the conclusion of one year’s worth of planning and execution in putting together an awesome lineup, a great location, some great people and even some of the rarest people there are, MSA patients. Yes part of the awareness activities will include at least one short presentation by a specific 47 year-old MSA patient and friend of this former caregiver, Austin Crawford.
We will be Gettin’ the Word Out! By the way, one way you can see that happening is watching the Blues Television Network, www.bluestn.com. EC has donated more than $13,000 in air time for PSAs and will, besides playing in Peoria, continue to highlight the need to raise awareness and dollars for this disease.
Anyone who is attending the conference will get to meet the fine lady who turned her MSA journey into a positive one. Ritje has done wonders for awareness for this Beast and continues her work even while she’s here. Please be sure to get a mile in that day, register your distance in the database and light a candle for all those who have suffered through Parkinson’s on steroids and found peace only in death. Very fitting, hope for the future in the lighting of the candle and recognition of the person who passed.
The other good news is that in short order the MSA Coalition research grant program will be back stronger than ever. Much planning, sharing with others, listening to experts in a variety of fields and to our Scientific Advisory Board will pay off in a plan of which you will be proud. It will help us attain that goal I’ve stressed in previous writings – a potential treatment or cure for MSA patients by 2029. Pay close attention to all the media platforms for information regarding this new, innovative approach to researching a rare disease.
Finally, October 3rd is the Beat MSA! Event in Peoria, IL. I wrote this one time and feel it sums up the reason for any and all fundraisers/public awareness events, and the one here in the Monarch Music Hall.
“There are more people on the Run to Memphis for St. Jude than there are impacted by MSA in central Illinois.”
“There are more people in one city block on Race for the Cure Day than there are people impacted by MSA in central Illinois.”
That means awareness and education and entertainment – alongside the 3Ks and 5Ks and marathons – are interconnected. At least in my mind. To see what’s going on go to www.msabgon.org. If you want to support the event by bidding on a silent auction item, or just want to donate, go to www.32auctions.com/GtWO2019.
You will be amazed at how many blues artists, college basketball programs and coaches, and local businesses have joined in this fight to beat the Beast. Become a part of the team!
I told you this can be a wonderful time of the year. I hope it is for you.