May 10 is ALS Awareness Day in Ann Arbor

During the Ann Arbor City Council meeting on Monday, May 7, the honorable Mayor Christopher Taylor proclaimed May 10th as ALS Awareness Day in Ann Arbor for our organization’s 10th year of being Active Against ALS! Accepting the proclamation: our current chair Michael Meister and Susan Miller recent past chair and one of our founding board members. Also in attendance from our organization: Bob Schoeni and his wife Gretchen, Anne Gilbert, Knut Hill, Dave Lowenschuss, Allen Bateau, Sara, Mike, Maddie and Sam Robins, and Kathy Siler

Click HERE to make your ALS Awareness Month Donation

The complete proclamation is shown here:


Here are Susan Miller’s remarks:

Thank you to the Mayor and the City Council for recognizing Ann Arbor Active Against ALS and supporting May as ALS Awareness Month

I’d like to take a couple of minutes to share with you a bit about our story:

Ten years ago this July, University of Michigan economist and researcher, and beloved community member Bob Schoeni – who is with us tonight – was diagnosed with ALS/Lou Gehrig’s Disease. I was one of a group of Bob’s friends and colleagues who were stunned by the news. Desperate to DO something, beyond immediate support to Bob and his family, we decided to respond with ACTION. We formed Active Against ALS, a nonprofit whose mission reflects the values that have guided Bob his entire life.

  • We encourage physical activity for all ages, in response to a disease that robs people of their ability to move. After all, Bob was known in the community as Coach Bob, coaching his daughters’ field hockey and soccer teams.
  • We work to build a compassionate community. Bob himself has done research on the positive impact that community support can have on an individual’s health and well-being.
  • Especially important to Bob, we provide opportunities for young people to understand the power of being involved and giving back to their community: our fall Rivalry Bike Ride between U of M and MSU stadiums was started six years ago as a Bar Mitzvah project by a local youth who is now a Board member, and our summer swimathons this year involved more than 200 youths who together swam more than 250 miles and raised over $25,000.
  • Of course, our ultimate goal is to raise awareness of and critically needed funds for ALS research. Even though more than 20,000 Americans may be living with ALS at any given time, many pharmaceutical companies remain hesitant to invest the resources necessary to further the research.

So, for the past ten years, to raise funds and awareness in our way, we have hosted 5-6 annual events that are fun, active and family-oriented. You may have even participated one of them. Our annual April Fool’s Day Twinkie Run this year attracted close to 600 participants. Other of our events include:

  • the Box Car Derby for kids ages 3-20, in partnership with Phi Delta Theta campus fraternity,
  • the Electric Bolt 8K in July, with the national Electricians Training Alliance, and
  • a Barn Dance for ALS.

As a volunteer organization, we are especially proud that since December 2008, guided by a Scientific Advisory Board of national experts, and with the help of our community, we have awarded over half a million dollars to cutting edge ALS research. With our Ten-Year Anniversary Campaign, we hope to raise at least $150,000 more. With research costing an average of $100 per minute, every dollar counts, and we are determined to keep Ann Arbor and beyond active in the fight against this horrific disease. Thank you so much for joining us in this fight.

Susan Miller