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About A.L.S.

WHAT IS ALS?

A.L.S. Family Charitable Foundation

Amyotrophic Lateral Sclerosis (A.L.S.) is a progressive, fatal neuromuscular disease characterized by a degeneration of motor nerve cells in the brain and spinal cord. The disease attacks the part of the nervous system that controls voluntary muscle movement. The nerve cells that control muscle cells are gradually lost.

A.L.S. ultimately robs those affected of every physical activity. It is a debilitating disease that can make every breath a struggle. The harshest reality of the disease is the patient’s consciousness of its progression. The victims virtually become prisoners in their own bodies. Despite years of research, the cause of A.L.S. has yet to be determined, making the search for a cure all that more difficult.

Did you know…

lou gehrig

  • New York Yankees superstar Lou Gehrig was diagnosed with A.L.S. in 1939. He died two years later at age 38.
  • Currently, 30,000 Americans have the disease with over 5,600 people in the United States being diagnosed with A.L.S. each year.
  • The life expectancy of an A.L.S. patient averages two to five years, although the disease progresses at different rates in each individual.
  • About 5% to 10% of people with A.L.S. have an inherited form of the disease.
  • More people die every year of A.L.S. than of multiple sclerosis or Huntington’s disease.
  • It can cost up to $250,000 per year to care for an A.L.S. patient as the disease progresses.

This disease, maybe more than others, has a tremendous effect on families both physically and emotionally. The inevitable decline of patients takes a toll on the family who can only watch helplessly as their loved ones slowly become incapacitated. As small tasks become insurmountable the dedication of caretakers becomes increasingly more important.

Treatment focuses on helping the person cope with symptoms and avoid complications for as long as possible. Physical, occupational and speech therapy may be helpful in maintaining strength for varying lengths of time. In some cases drug therapy has proven helpful to temporarily relieve symptoms to make the patients more comfortable.

Although the prognosis is bleak for the nearly 30,000 Americans that suffer from A.L.S., the community of patients and their families truly live each day to it’s fullest. The words spoken by Lou Gehrig in 1939 are echoed in the way that A.L.S. patients live today. Embracing each day, knowing that they, too, have a lot to live for.

That is why the A.L.S. Family Charitable Foundation works so hard.

The A.L.S. Family Charitable Foundation, Inc. was founded by Donna Jordan and Mary Ann (Sciaba) Singersen in dedication to the loving memory of Clifford Jordan, Jr. & Edward J. Sciaba, Sr. The impact of these two great men had such a profound effect on their families that they have left behind not only a legacy of love but of a boundless hope!

ALS in wheelchair
ALS Family
Kids placing ALS Memory Bricks