Ann Arbor Active Against ALS is a grassroots, nonprofit organization whose mission is to raise funds for research toward effective treatments and ultimately a cure for ALS (Lou Gehrig's Disease), while raising awareness of the disease, encouraging physical activity, and building a compassionate community.

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May is ALS Awareness Month

During ALS Awareness Month we are sharing a collection of personal stories from our active members and those of us affected by ALS.

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May 31 – Bob Durgy, brother of Matt Durgy

May 29 – Sam Sugerman, Rivalry Ride Founder

May 27 – Kellye McGlumphy, Michigan Students Active Against ALS

May 24 – Our 2014 Ice Bucket Challenge

May 21 – Ria Lowenschuss, long-time volunteer

May 18 – Kevin Dickey, Phi Delta Theta UM Alumni

I do not have a personal connection to ALS. I do not have family members stricken by this disease, and to my knowledge, my closest friends and neighbors do not either. At least that much was true until I left home to attend the University of Michigan.

When I arrived on campus, I lived a life of your typical freshman. I spent weeknights in the undergraduate library wasting as much time on Facebook as I did learning from my Econ textbook. I complained about dorm food the prescribed 20 minutes a day. And On Saturdays, I woke up earlier than any other morning to participate in game day festivities and cheer the maize and blue onto another victory. Like most out of state students, I was on track to live my next four years within a fifteen minute radius of the corner of State Street and South U, only interacting with the Ann Arbor community in the checkout line at Kroger every few weeks.

However, that all changed through my involvement in Phi Delta Theta, a social fraternity at the University. Since 2002, Phi Delt chapters nationally have supported ALS non-profit organizations in recognition of Lou Gehrig, who pledged and was initiated into the Phi Delt chapter at Columbia University in 1925. I was first introduced to Ann Arbor Active Against ALS after being elected as my pledge class’ philanthropy chairman. My responsibilities were limited to organizing volunteer shifts for our pledge class at the Ronald McDonald house. Hoping to have a bigger impact, I took over as our primary chairman, fairly uncertain what I had gotten myself into.

My first and perhaps best decision as philanthropy chairman was to Google Ann Arbor Active Against ALS and click the “contact us for more information” link. After several emails exchanged with various Board members, I was invited to attend a meeting. That initial meeting turned into nearly three years of monthly Board meetings, countless fundraisers, and an experience as influential as any class or extracurricular activity during my four years on campus.

There is no moment more rewarding during my time with the organization than last year’s Boxcar Derby. As many of you know, Boxcar has been co-hosted by Active Against ALS and Phi Delt for the past 8 years. Despite recent success, there was once a time we considered shutting it down. But, somewhere behind the scenes, countless people were working to raise donations, revamp excitement, and turn this event into a success. In two shorts years, together, Phi Delt and Active Against ALS turned a nearly unprofitable event into a $20,000 fundraiser.

At the conclusion of the derby, Ann Arbor Active Against ALS gifted our fraternity a handcrafted boxcar wall-mount as a gesture of gratitude for our partnership. That gratitude is not one-sided. My experience as a Board member had a profound impact on my experience in Ann Arbor. Unlike many students, through this organization I discovered countless reasons to call the city of Ann Arbor home that weren’t limited to football saturday’s, late-night Cheesey bread from Pizza House, and life on the corner of South U and State. Thank you for welcoming me to work alongside you, to join you in your cause, and to be a part of your community.

Warmest regards, Kevin

May 14 – Elizabeth Stidham, long-time volunteer

May 11 – Lucy Lowenschuss, active volunteer

May 9 – Vivian Ross, long-time volunteer

May 6 – Maddie Schoeni, daughter of Bob Schoeni

May 3 – Eric Pillado, Phi Delta Theta UM Alumni


May 1 – Tam Nahra and her son, Max

Max with swim Coach Amanda

One of the better decisions I have made in my life was visiting Community Day Care in spring of 2010 for my then 2.5 year old son Max. We give thanks for the nudge from Cathy Shakespeare, a family friend from Bach Elementary. During our pre-school interview, it was clear that Laura and the CDC were extraordinary. My husband and I were certain we had never met anyone like Laura – within minutes, she showed compassion, engagement, intelligence and humor. We signed up to CDC fully – and they to us. Laura’s and Cathy’s passion for Active Against ALS became part of our family’s consciousness and dialogue. Of course, we knew of Bob from my older daughter’s soccer games against cross-town rivals Burns Park. Even if Coach Bob had been coaching the older girls’ teams, he was noticeably on the sidelines for the young ones.

Because of our connection to Active Against ALS, we have attended events, volunteered, and learned a great deal about ALS. The creativity and community spirit of Active Against ALS has kept us engaged. This very organization helped us teach our children the meaning of community. When something unthinkable happens, you work together to make it better, to solve a problem, to support those families in need, to just be present. You do what others cannot do and in this case – be active when others cannot – and raise a clink for research because it is everyone’s responsibility.

My son Max, now an 8 year old, has taken a particular interest in ALS research. Max struggles with basic communication because of Autism but his genius mind is fiercely busy. While discussing the ALS Swim-athon, Max was utterly devastated to learn there was STILL no cure for Bob, and there had been no cure for another family’s friend Trickett. So, he swam and swam. Mind you – our Max won’t ever be a Winnie Jalet – let’s be clear – the coordination of limbs is a challenge. But Active Against ALS gave him a mission to push himself. And because Max didn’t quite achieve his goal during morning swim, he went back to Huron Valley and swam some more. On his own, he swam because he felt like he should – because he could swim – and he understood he would raise more research funds.

And just how impactful has Active Against ALS been for all of us? That swim-a-thon became yet another nod to our compassionate community – as the Enrique-Shakespeare Family, the Jalet Family, Laura’s momma Kathy, and others decided to donate in Max’s name so he’d be recognized. We were leveled.

Max has now included medical research in his future plans. After the swim-a-thon, he got the idea that maybe little robots (nanobots) may lead to a cure for ALS. He may not be far off. While we don’t want to wait for Max to complete his doctoral work or research, it is fair to say that Active Against ALS continues to cultivate our efforts for a cure, to enrich our community, and to plant seeds in the hearts and minds of our next generation of researchers.
– Tam

Read more Personal Stories we’ve collected since 2008. Check back here every couple of days or so this month to read and watch more personal stories. The most effective way to raise awareness about ALS is to share a story about someone you know who lives with or has lived with the disease. Please email us to share your story.

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