Genealogists Help in the Hunt for ALS Genes along a large Family Tree in Kentucky and Virginia

One family with origins in Ewing, Virginia, just east of the state’s mountainous meeting point with Kentucky and Tennessee seem to suffer from a medical condition they knew as cancer of the throat. They lost the ability to chew, swallow, and speak, they lost weight, and then they died. A doctor recognized it as something else: ALS. The medical condition also is often called “Lou Gehrig’s Disease.”

NOTE: ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.

Notable individuals who have been diagnosed with ALS include baseball great Lou Gehrig, theoretical physicist, cosmologist and author Stephen Hawking, Hall of Fame pitcher Jim “Catfish” Hunter, Senator Jacob Javits, actor David Niven, “Sesame Street” creator Jon Stone, musician Lead Belly (Huddie Ledbetter), entertainer Dennis Day, jazz musician Charles Mingus, former vice president of the United States Henry A. Wallace, and others.

ALS often is inherited, passed on from one generation to another within a family. However, not everyone within the family develops ALS. By the time the symptoms are apparent, it is normally too late to slow down the disease.

An interesting article by Eric Boodman in the web site describes the search for the ALS victims and especially the search for those who had not yet developed the symptoms of ALS. Genealogists and medical experts worked together to find those susceptible to ALS amongst the widespread family members in an area around Cumberland Gap and especially those who have since moved elsewhere. Together, genealogists and medical experts are saving or prolonging the lives of many people.

You can read the interesting story at:

My thanks to newsletter reader Eilene Lyon for telling me about this interesting story.


It used to be thought that familial ALS accounted for about 5 percent of all cases. That means 95 percent are what are called sporadic, that is with no traceable genetic component. Recent research has now raised the familial percentage to 8.5 percent. Some experts have estimated that with more accurate records the familial percentage might be as high as 10 percent. So while it’s now considered more common than it used to be, it’s still the rarer form.


This is a fascinating article. Thank God there are people like Dr. K and Debby Taylor who persevere in spite of the difficulty. I hope Dr. K and Debby find people who want to continue their work with the same enthusiasm. He and Debby have come way too far and spent so much of their lives to let the work slide. I’m glad to read that the family members involved here have come to realize that this work is the only way to help their children and grandchildren and beyond.


Fascinating article. This kind of research is so important; I’m glad Dr. K is looking for someone to take over his role. 40 years ago a young woman I knew well, who was in her 30s with 3 young kids, died of ALS. At her memorial service, her brother who also had it, showed up in a scooter, and another brother had already died of it. Clearly she had some kind of familial ALS. I’ve wondered since how her kids are doing, as I’ve moved away. Another close friend got it in his 70s within the last few years; it began with swallowing issues. He continued to travel for two years before a quick decline. He told me his case was not familial, so at least he didn’t have to worry about his kids and grandkids getting it.


I was diagnosed with ALS in April 2017 and I decided to fight this naturally by better diet, natural herbs, organic food, and eliminating all toxins in my life. I can gladly say my fight is over, after using ALS herbal remedy I purchased from Best Health Herbal Centre, the herbal remedy drastically slowed my progression the first week of usage and reversed my ALS the last week of usage. I used the ALS herbal remedy for only six weeks.

I am a man of faith and I believe that when HOPE is lost ALS wins. Believe you can beat this disease naturally and have faith that nothing is bigger than God. for any one who wants further details just go through their website ww w .besthealthherbalcentre. co m


i was diagnosed 2011. i was diagnosed with the bulbar form of ALS and was given one year to live. My symptoms progressed quickly. Soon i was having difficulty breathing, swallowing and even walking short distances. With the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using diet, herbs, which i feel has made the most difference. The ALS natural formula immensely helped my condition, it reversed my ALS. my slurred speech. And then the inability to eat without getting choked, breathing, and coughing gradually disappeared.


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