April update

It has been a crazy full moon week. I fell while walking two dogs, one large, one medium-sized, that took off with me on their leashes. As I was sitting in the orthopedic doctor’s office listening to my diagnosis (fracture of the rotator cuff bone) and the prognosis I felt fortunate. Wearing a sling for several weeks and physical therapy is inconvenient and not fun but my broken bone is not a life-threatening illness and there is treatment. Kairit is not so lucky.

In conversations with people who work in ALS research and support services, the key in finding treatment and a cure is money. The treatments for cancer that have resulted in remissions and cures for patients have come as a result of billions of dollars into research and development. ALS has been underfunded in part because it affects fewer people per capita.

The following information comes from the National Institute of Health website:

As many as 20,000 Americans have ALS, and an estimated 5,000 people in the United States are diagnosed with the disease each year. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people also can develop the disease. Men are affected more often than women.

In 90 to 95 percent of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Patients do not have a family history of the disease, and their family members are not considered to be at increased risk for developing ALS.

About 5 to 10 percent of all ALS cases are inherited. The familial form of ALS usually results from a pattern of inheritance that requires only one parent to carry the gene responsible for the disease. About 20 percent of all familial cases result from a specific genetic defect that leads to mutation of the enzyme known as superoxide dismutase 1 (SOD1). Research on this mutation is providing clues about the possible causes of motor neuron death in ALS. Not all familial ALS cases are due to the SOD1 mutation, therefore other unidentified genetic causes clearly exist.

We need to find treatment and a cure now. We can do this. There is much data compiled over the past decade. We know what happens in the body of an ALS patient. Now we need to find out how to stop the disease from progressing, what causes it, and how to cure it. There are many clinical trials going on. If we can put the researchers into a room for a few days to discuss findings, give them the face-to-face time to go over data, then perhaps the goal of finding treatment and a cure might be closer.

Kairit is worthy of this goal. Everyone with ALS is worthy of this goal. It does not matter that fewer people in the world get ALS than cancer or some other devastating disease. Life is precious for all. Let’s give everyone a chance to live it to its fullest.