ALS registry in Massachusetts

[debgeisler]

I've just received email inviting me to a press conference to discuss the first-ever ALS Registry in Massachusetts. The ALS Association (Massachusetts chapter) has every right to be proud of this important step forward in the identification, tracking, and analysis of the disease.

The email notes, in part,

This Registry allows for the identification of all cases of ALS in Massachusetts. In turn, it will help researchers study both the incidence and prevalence of the disease, identify trends, and develop additional research studies related to better understanding the disease. In short, the ALS Registry in Massachusetts brings us one step closer to a cure.

To Rick Arrowood, president of the Massachusetts chapter, and to all of those who worked so hard to make the Registry a reality, my congratulations.

Tracking the disease (which killed my father at the age of 54) has already shown a series of potential environmental factors that may explain some of what causes ALS. (A statistically significant portion of ALS sufferers are professional athletes; Guamian ALS struck a higher than statistically accountable number of residents of Guam and related territories in the 1950s; and familial ALS [accounting for only 5-10% of the total cases] gives offspring a 1 in 2 chance of developing the disease.)

As Wikipedia notes, we don't know what causes ALS. "Researchers suspect a virus, exposure to neurotoxins or heavy metals, DNA defects, immune system abnormalities, and enzyme abnormalities as the leading causes of the disease." What is known is that ALS has been linked to Chromosome 21 in humans (believed to cause ~40% of all familial ALS cases). Families (like mine) with known neurological issues connected to chromosome 21 (like migraines and epilepsy) have an increased likelihood that an ALS patient in the family is not suffering from "sporadic ALS."

:-) Genetic Russian roulette.

Comments

[dsgood.livejournal.com]

Guam: I've read that during WW II, food was scarce enough at one point that people ate anything which wasn't more than mildly poisonous. I wonder if that was a factor.

The migraines I used to have were allergy-related; this means I might have one less thing to worry about. Or might not.

[debgeisler.livejournal.com]

Guam: I've read that during WW II, food was scarce enough at one point that people ate anything which wasn't more than mildly poisonous. I wonder if that was a factor.

They don't know, really. There have been other clusters, and some appear to be pollution-related.

The migraines I used to have were allergy-related; this means I might have one less thing to worry about. Or might not.

Migraines are just one of a number of conditions that may be related to problems with Chromosome 21. My family has a whole bunch of them. One of my sisters has epilepsy. She, my brother, and I all have migraines (although mine are the worst). And dad died of ALS.

Many migraines are like yours -- they have a different cause entirely. Unless you have other indicators in your family, you probably don't have a bunged up 21st chromosome.

[ruthling.livejournal.com]

I work with some of the folks who are working on this!

[debgeisler.livejournal.com]

Tell them, from me, thank you!

First Report due this Summer

[(Anonymous)]

Thought you would like to know that the MA Dept. of Public Health is releasing the first report on the ALS Registry this summer.

Regards,
Rich Lombardo
Communications Manager
The ALS Association Massachusetts Chapter