About Ann Arbor Active Against ALS (A2A3)
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.
The organization was founded by a group of friends and colleagues of Ann Arbor residents and University of Michigan Professors, Bob Schoeni and Gretchen Spreitzer following Bob's ALS diagnosis in July 2008.
We are a completely volunteer organization. Our "office" rotates among our board members' homes. Our children make signs for our events. Not only do we want the maximum of every dollar raised to go directly to finding a cure for this horrible disease; we also want to be a real community of support to Bob, Gretchen, their two beautiful girls, and as many families that we can reach out to whom are dealing with an ALS diagnosis.
Raising funds for research toward effective treatments and ultimately a cure for ALS (Lou Gehrig’s Disease)
While researching how we could somehow help Bob, we learned that:
- There is no effective treatment or cure for ALS.
- ALS is labeled an "Orphan Disease", which means that pharmaceutical companies don't invest in ALS research because they believe that too few people have the disease to make a treatment profitable.
- The reality is that someone is diagnosed with ALS every 90 minutes, but because life expectancy is only 2 - 5 years, relatively few people have ALS at one time.
- The majority of funding for ALS research comes from private donors.
- Due to the need for extensive and expensive patient care, often less than 15% of money raised by National ALS organizations is earmarked for research to find a cure.
Based on what we learned, we chose to support Bob and Gretchen by raising money to donate directly to research labs that are working on finding a way to slow or stop ALS.
Where are the funds donated?
A2A3 aims to donate funds so that they are used directly and immediately for cure-driven research. Current recipients include:
ALS Therapy Development Institute (ALS TDI) (www.als.net)
ALS TDI is a nonprofit biotechnology company started in 1998 by James Heywood when his 29-year old brother Stephen was diagnosed with ALS. Starting in the basement of Jamie’s parents, ALS TDI has grown into the world’s largest research and development program focused exclusively on ALS. Thirty leading scientists and technicians work in a state-of-the-art laboratory in Cambridge Massachusetts. They run an open research program, sharing their research findings on a daily basis via the web with patients, doctors and the research community. Their goal is to put themselves out of business as soon as possible by finding – or helping others to find – a treatment and cure for ALS.
University of Michigan’s Program for Neurology Research and Discovery (http://www.med.umich.edu/PNRD/index.html)
In 2000, a group of neurologists and neuroscientists came together to form what is now known as the Program for Neurology Research and Discovery. Under the direction of Eva L. Feldman, M.D., Ph.D., Russell N. DeJong Professor of Neurology, the group has undertaken research in some of the most complex and challenging fields of disease. From ALS to the nerve damage that disables people with diabetes, they have made medical discoveries that are bringing treatments to patients. With a combination of mind power and technical resources found in few other places, the Program for Neurology Research and Discovery is leading the way in translating laboratory discoveries into new patient therapies.
Are donations tax-deductible?
A2A3 has registered as a 501c3 non-profit corporation. Donations are tax deductible to the full extent of the law. Please check with your tax preparer or the IRS for more information.
Donations can be made to: Ann Arbor Active against ALS
2020 Shadford Road
Ann Arbor, MI 48104
Raising awareness of ALS, encouraging physical activity, and building a compassionate community.
Awareness, physical activity, and compassion relate to how we do what we do.
In order to raise money, we need to promote awareness of ALS. Many are vaguely familiar with the term “Lou Gehrig’s” disease, but few have a real sense of the implications of this devastating neurodegenerative disease on individuals and their families.
We encourage people to be active as a way to counter what ALS does – prevents people from being physically active altogether.
ALS also advances a feeling of isolation. A2A3 fosters compassion and community spirit. What we have come to love about A2A3 is the energy, enthusiasm and creativity that people of all ages have brought to this fight. We have seen children and adults create together, play together, and exercise together all in the name of fighting ALS. ALS is a bleak diagnosis, and yet it has been the vehicle for us to remember the importance of community support. A2A3’s efforts to reach out have helped us demonstrate to many young people that the world is a better place when we all work together.
Learn about our other fun, active, community events at www.a2a3.org.