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.
In July 2008, Bob Schoeni and Gretchen Spreitzer sent an email to their friends letting them know that Bob had just been diagnosed with ALS. Overwhelmed by this news, a group of friends, colleagues and neighbors got together to see how we could best help Bob and Gretchen. We quickly learned that there is no cure or treatment for ALS and that research to find a cure for this devastating disease is dramatically under-funded. ALS is considered an orphan disease, which means that it affects under 200,000 people nation-wide at any one time. Pharmaceutical companies are reluctant to invest in research for these diseases because they do not promise enough profitability. If life expectancy could be increased, however, the pharmaceutical industry would certainly invest research money in finding treatments. There are as many people diagnosed with ALS as there are with Multiple Sclerosis (MS), which is now considered treatable (and profitable).
Thus, in response to a disease that steals one’s ability to move, we created Ann Arbor Active Against ALS, a 501(c)(3) that encourages people to be active (both physically and in the community) while raising funds for ALS research and building awareness about the disease. We sponsor four family-oriented fundraising events a year:
Active Against ALS also supports many other Active Initiatives, including personal sports challenges, bake sales, car washes, lemonade stands, and many others.
Active Against ALS draws its strength from the energy, enthusiasm and creativity that people of all ages have brought to this fight. We specifically organize activities that include children and young people so that we can foster compassion and community spirit in the next generation. Active Against ALS’s efforts to reach out have helped us demonstrate that the world is a better place when we all work together. Alone, we cannot make ALS disappear, but together, we create a caring community and make a difference. Bob says that the community support of Ann Arbor Active Against ALS is some of the best “medicine” that he’s received.
In the first seven years of Active Against ALS’s existence, we have donated over $400,000 to the most advanced and progressive ALS research. We are confident that our efforts, joined with the efforts of organizations around the country, will ensure that treatments and ultimately a cure will be developed soon.