What is ALS?
Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease or Motor Neuron Disease (MND), is a neurodegenerative disorder that attacks motor neurons in the brain and spinal cord. For reasons that are not completely understood, motor neurons die and the brain can no longer control muscles or signal them to move. A person with ALS typically loses the ability to use their hands, legs, voice and respiratory system. In most cases, the mind remains unaffected. ALS is not rare; 350,000 people have it worldwide, and approximately 1,000 have it in Michigan. People live on average two to five years following diagnosis. It is a devastating diagnosis, and currently there is no cure or effective treatment for ALS.
Facts About ALS
- There is currently no effective treatment or cure for ALS. There is a single medicine, Riluzole/Rilutek,that extends survival only 2 to 3 months.
- Sporadic ALS is the most common form and accounts for 90 – 95% of all cases of ALS. Familial ALS, an inherited form of the disease, accounts for the remaining cases.
- 50% of people with ALS live 2 to 5 years after diagnosis, 20% live 5 to 10 years, and 10% live 10 years and more.
- ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
- Although there are hypotheses about genetic and environmental factors, the cause of ALS remains unknown.
- In Michigan, it is estimated that there are over 1,000 people with ALS. There are 200 newly diagnosed cases every year.
- In the U.S., over 30,000 people are currently living with ALS and approximately 5,600 people are diagnosed each year. That means there is a new diagnosis about every 90 minutes.
- ALS strikes both men and women, generally between the ages of 40 and 75, although approximately 25% of cases occur in adults in their 20s and 30s.
- The senses, including hearing, sight, smell, taste, and touch, are not affected by ALS.
- The incidence of ALS is five times higher than Huntington’s disease and about equal to multiple sclerosis.
- Many ALS patients can live longer and more productive lives because of current research. Improvements in medical management, including nutrition and breathing, have increased patient survival.
- Lou Gehrig’s disease is a disorder that’s also called amyotrophic lateral sclerosis, or ALS. The official name comes from these Greek words: “a” for without, “myo” for muscle, “trophic” for nourishment, “lateral” for side (of the spinal cord), “sclerosis” for hardening or scarring.
What is the current state of research for ALS?
ALS research has long been underfunded because pharmaceutical companies do not believe a drug would impact enough people to ensure profitability. If life expectancy could be significantly prolonged for people with ALS, there would be a large market for drugs, and pharmaceutical companies would be motivated to invest in further research for additional treatments. In the past decade, funding levels have started to slowly increase through government grants, private initiatives, and partnerships with organizations such as the Muscular Dystrophy Association. With this increased funding, researchers have made significant strides to identify new ways to treat this disease, including through gene therapy and stem cell therapy. As their understanding of the disease increases, scientists are optimistic that effective treatments are within reach. Currently, a number of clinical trials are underway in stem cell research, already FDA-approved drugs and newly developed drugs that offer hope for future treatments of ALS.
What does Ann Arbor Active Against ALS do with funds raised?
Ann Arbor Active Against ALS donates funds to labs that use the money directly and immediately for the most advanced and progressive ALS research. Twice a year, the Board of Directors discusses and votes on possible research projects to fund. Board members learn as much as possible, and also receive input from independent scientific advisors. This ensures that your contributions directly fund the most promising cure-driven ALS. The Board also follows up with recipient institutions to track their progress and use of funds. We are currently in the process of developing a Scientific Advisory Board to strengthen the selection process.
How can I participate in Ann Arbor Active Against ALS?
- Come to one of our fun, annual events!
- • Have a fundraiser idea? Create your own initiative or Contact Us and we’ll help you do it!
- Volunteer to be on one of our Committees.
- Make a donation.
- Spread the word! Forward our newsletter, Like us on Facebook, or Share our YouTube videos.
Are donations tax-deductible?
Ann Arbor Active Against ALS is a 501(c)(3) nonprofit organization. Donations are tax deductible to the full extent of the law. Please check with your tax preparer or the IRS for more information. Contact Us to request our Tax I.D. number.
Individuals donating to Ann Arbor Active Against ALS initiatives have the option to designate their donation to a fund which is available to the Schoeni/Spreitzer family to help with future un-reimbursed health care costs. These donations are not tax-deductible. Any unused money in this fund will be donated to Ann Arbor Active Against ALS for ALS research. Checks can be made out to the Schoeni ALS Support Fund and sent to:
Schoeni ALS Support Fund
2020 Shadford Road
Ann Arbor, MI 48104