ALS Nonprofit Launches in Burns Park

On Sunday, the northeast corner of Burns Park was already teeming with humanity at 1 p.m. That was the start time that Ann Arbor Active Against ALS [A2A3] had scheduled for its kickoff fundraiser: a family field day. David Lowenschuss, one of the organizers, pointed out Bob Schoeni for us among the crowd waiting for the formal start to the festivities on a crispy overcast day. Schoeni had provided the impetus for the formation of the A2A3 nonprofit, when he was diagnosed with ALS in July.

A few minutes later, when Christopher Taylor took the microphone to help get the field day fun started, the gray skies had gone from spitting a few misty drops of rain to a steady sprinkle. It was hard to escape the conclusion that it was really raining. Added to a breezy day that saw temperatures in the low 50s, the rain meant that Taylor’s declaration, “It’s a beautiful day!” easily drew the chuckles it deserved from the crowd.

When Schoeni took the mic, he talked about the importance of the support from family, friends, neighbors – because of the hard evidence that showed that it actually lengthens lives of ALS patients. He thanked everyone for the support he’d already received, saying he was sure it had already added days, weeks, months, even years to his life. But ALS is a disease with no known cure or treatment. So was this another case of a guy standing in the rain declaring that it’s a beautiful day? More on the rain and that question later. First, a bit about the guy and the activity that filled the afternoon.

Bob Schoeni led off Sunday’s activities with some stretching exercises. Taylor had joked that stretching exercises were important to an injury-free day of activity – something that their insurance carrier would appreciate. Some of those stretches demonstrated by Schoeni were solo enterprises, even though they were done in a giant group of a couple hundred people: windmills, jumping jacks, torso twists. But other stretches involved partnering up – finding somebody to lean on. For those, Bob teamed up with his wife, Gretchen Spreitzer.

Bob told The Chronicle that he and Gretchen, when they were graduate students at the University of Michigan School of Business, hadn’t really experienced Ann Arbor as a community. They’d been focused pretty squarely on their studies. After graduating and living for a time in sunny California (Los Angeles), the place they picked out to raise their children was Ann Arbor. Asked why – when they presumably knew about the cold of an Ann Arbor February – Schoeni looked around the park and said, “This wouldn’t happen in L.A.”

What was happening was this: kids and adults were playing kickball, running obstacle courses, hula-hooping, participating in clinics for football and soccer, enjoying tasty baked goods, gobbling up grilled bratwurst, drinking hot chocolate – all to launch the fundraising efforts of A2A3. Those efforts will continue past Sunday partly in the form of various coaching programs. If you have a personal training goal – run a 5K under 19 minutes, complete a 10K, do 50 push-ups – A2A3 can provide coaching and training, plus support for fundraising connected with that goal. The idea is that as people complete their training goals, they collect the cash that others have pledged, and funnel it to A2A3.

A2A3, in turn, will send that money to organizations like ALS Therapy Development Institute (ALS TDI), which employs 30 full-time scientists working exclusively on treatments and a cure for ALS. Amy Whipple, who is midwest regional director for ALS TDI, was on hand for the Burns Park fun. She said that research on ALS fell to organizations like ALS TDI because it was an “orphan disease,” meaning that the roughly 8,000 people diagnosed each year with ALS did not represent a large enough number to make it a financially attractive proposition for Big Pharma. Whipple was joined at the park by her cousin, Dan O’Connor, who is an undergraduate studying business at UM. O’Connor and Whipple had lost an aunt to ALS.

O’Connor is thinking of applying to graduate school in business. Chatting with O’Connor, Schoeni asked him what subject he thought he might like to specialize in. While he’s not firmly decided, O’Connor said he was thinking about the public policy end of things. “Hey, that’s my area!” exclaimed Schoeni, and told O’Connor he should get in touch later, because he’d be happy to talk to him about it. So Schoeni is not exactly shutting things down – he continues to add people and work to his world.

That same spirit of continuing to stretch himself was reflected in Schoeni’s turn on the kickball diamond. He tried to stretch a sure single into a double. Although he was thrown out on the base path, he had a smile on his face as the ball bounced off his back.

Through the afternoon, the rain gradually abated. Around 4 p.m., the scheduled end of the event, and as the fun started to wind down, we had a chance to focus briefly on one of the tunes that had been pounding out of the PA speakers all afternoon: Elvis Costello’s “Forty-Five.” We asked Joel Dalton, who assembled the four hours worth of music onto an iPod, if it was just the same mix he used for the Burns Park Run.

No way. The soundtrack for the run is running-specific, Dalton said, and there are some tunes selected partly as a function of the morning-time start. We didn’t have a chance to press him for details on the selection criteria for the A2A3 event, because we didn’t want to miss the root beer giveaway. The remainder of the root beer (from a keg provided by Morgan and York) was being given away free – it had not been a popular drink on a cold November day.

But Costello’s song “Forty-Five” was probably a good note to wind down the day. In those lyrics, he riffs on the various interpretations of “forty-five” – from the year 1945, to the vinyl records that used to spin at 45 rpms, to chronological age. Next year Bob Schoeni will turn 45. And no, he’s not a guy standing in the rain declaring it’s a sunny day. He’s a guy running around in the rain, declaring it’s a sunny day, then watching the clouds part to let some rays of sun through. For the record: at 4 p.m. on Sunday, Nov. 2, the northeast corner of Burns Park was bathed in sun.

Editor’s note: In the month of November, Ann Arbor residents can help the A2A3 cause by mentioning A2A3 when making purchases at the following area retailers – they’ll donate to A2A3 the indicated percentage of their sales during the given time period:

Nov. 3-9
Nicola’s Books [5%]
Morgan and York [5%]

Nov. 10-13
Learning Express [20%]

Nov. 19
Running Fit [5%]

Nov. 1-30
Arbor Vacuum [10%]
Better Health Store [10%]

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