ABOUT THE RUN

Who Will Benefit?
The ALS Association: About half of the money raised goes to the ALS Association and MDA. The ALS Association, St. Louis Regional Chapter was founded to serve ALS patients and their families. The Association continues to focus on patient services with an additional emphasis on public awareness, community/professional education, advocacy, and research. They place volunteers into homes of people affected with ALS. The volunteers help with simple house chores (dishes, laundry, walking dogs, etc.) so the family can spend time together instead of doing housework. The volunteers are also trained to be emotional support blocks, often providing companionship for the victim and their family. This program was developed to ease the sense of the family being overwhelmed and to create a network of people to build public awareness of ALS. They have been successful in the past with various drugs and are excited to continue the hunt for more ways to help find an end ALS.

A Local Family: This year we are helping the Alber family. Kenneth Alber was diagnosed in January 2003 at the age of thirty one. His son Josh was 2 years old at the time. Darcy and Kenny both had decent jobs and were ready to start living the dream. Kenny worked for a home builder and kept dropping tools and sometimes his hands would go numb driving home from work. He went to a neurologist who ran some tests and within days, he was told he had 2-5 years to live.  He didn’t know anything about ALS, but now tries to educate everyone he comes in contact with, be it on-line or in person, about ALS.  He also shares experiences on Facebook and Patientslikeme.

                 Kenny has only been able to be independent because of the use of a power wheelchair, which he is now beginning to have trouble maneuvering; he will soon have to start driving it using a head array system.  Now, 2010, most insurance companies and Medicare will not pay for these types of equipment.  They don’t feel that it is "medically necessary" for a person to be able to get out of their home and be a part of society, to play outside with their children, attend family functions, etc. That is why Kenny, as a patient living with ALS, has to rely on the ALS Association and fundraisers to help pay for these types of things.  The other major expense the Alber family presently endures is the cost for caregivers.  The state is now trying to cut that funding back as well.  Kenny became very dependent 2 years ago and now requires care 24/7.  His wife has to hold down a job in order to pay the mortgage and bills, keep food on the table, and hopefully have enough money left over to spend on their kids so they can participate in sports, dance, and other activities.

Who Gets ALS?
5,600 people in the United States are diagnosed with ALS each year. 60% of the people diagnosed are men and 93% of the people are Caucasian. Most cases occur in patients between the ages of forty and seventy. 90% of diagnosed cases have no hereditary cause and are just an isolated case.

Is There Treatment?
There is no cure for ALS, only remedies to prolong life or to improve the quality of life. Drugs such as Rilutek are used to maintain function of muscles and prolong life. It is important to remember that ALS does not affect the mind so treatments to help improve the quality of life are critical.