By Larry Kellerman
October 3 is the fifth anniversary of the last fundraiser sponsored by the “Gettin’ the Word Out!” committee. This committee, organized initially by Larry and Colleen Kellerman, an MSA (multiple system atrophy) patient, had as its two goals to bring awareness to this very rare, terminal disease and raise monies for the MSA Coalition (now Mission MSA: https://missionmsa.org) to use for research. Over the course of six years this group, made up of volunteers and friends of Colleen, held a number of fundraisers, all supported by major college basketball programs and blues artists. The last one was the culmination of all the work that had been done with the previous events and was the highlight of the committee’s six-year run.
Over the last five years a lot has happened. The pandemic started four months after the event, I was diagnosed with late-stage prostate cancer and went through surgery, only to need two years later a 40-day round of radiation for the same. (So far results are good) However, I want to write a summary of the awesome night that unfortunately did not have the attention or the number of eyes and ears it deserved. Here goes.
Shortly after a March 2018 Gettin’ the Word Out! Fundraiser, planning began for one to be held on October 3, 2019. There was a significance to that particular day; it had been designated as World MSA Day by another MSA warrior. That gave us 18 months to put together a fundraiser. Each of the previous ones had been a bit more successful than its predecessor and we felt sure that pattern would continue, especially given the dedication of the volunteers involved.
As you might guess there were some hurdles that needed to be “hurdled” and though it took every one of those 18 months to bring the event to fruition, the effort was a success. At the appointed time on the appointed day in the chosen location and with the guest artists in performance the fundraiser kicked off. Over the next three plus hours those in attendance were treated to some of the best blues by five of the best local and national acts, and participated in a silent auction that included items from major college basketball teams and many awesome blues artists.
Here is a list of the steps the group took to accomplish the goals of raising awareness and dollars for MSA research.
- Identify a venue for an event hoped to attract several hundred attendees – done early in the process.
- Identify and carry out awareness activities – done throughout the 18 months.
- Identify the artist/performers and extend an invitation to perform – completed just days prior to the event.
- Advertise in places where blues was the focus of the event or the broadcast – as well as where blues artists might work – completed the last three months prior to the event.
- Identify an emcee who can keep the program moving – we lined up a local radio host and he was wonderful.
- Identify the various supplies needed for such an event and locate those who can provide those supplies – done right up to the event.
- Develop a menu and locate a source that can provide the food and pick up. Also identify a place that will take any surplus food so there is no spoilage and others can benefit also. Completed in the last 60 days prior to the event.
- Identify those who will man the control board, help bands set up and take down and serve the artists as they arrive – performed admirably by all those who helped
- Find a place that will provide a number of rooms at a reduced price for guests to the event – completed 60 days prior to the event.
- See if any MSA patients can attend to help the audience better undderstand what MSA does to those who suffer from it. Two patients, one from Idaho and one from eastern Illinois, attended and shared their experiences and time with those in attendance. One attended with her family just to be a part of the event.
In the end awareness of the disease had been shared and hopefully committed to memory, and monies raised for research were sent to the MSA Coalition. Without a survey we do not know how well the awareness was internalized. We do know our dollars, combined with many other dollars, helped lead to a new research paradigm within the Coalition’s research program and has helped bring about transformative change in identifying a potential treatment for the disease.
That was October 3, 2019. This year I will celebrate October 3 walking and donating once again in honor of my wife. I hope you find time to honor the MSA patient who is or was in your life. We will Beat the Beast!
