It’s often said that ALS is one of the cruelest diseases ever to exist. Quiet and often so subtle it’s initially disregarded as “fatigue,” a cure has yet to be discovered. Patient care to date mainly consists of therapies and treatments focused on lessening pain and prolonging lifespan. Physical therapies, experimental medications, and even (in its late stage) ventilators and feeding tubes can help, but ultimately ALS is terminal in all save for a few exceptional cases.
Modern medicine is incredible, however, and there’s been some good news as of late. The hugely popular “Ice Bucket Challenge” of the previous year raised millions of dollars for ALS research, with 87% of funds going directly to research, as well as patient and community services. In June of 2016, the University of Massachusetts Medical School announced that money raised by the challenge allowed their researchers to discover a gene called NEK1, the third to directly cause the disease.
Additionally, new research shows a promising link between the reduction of ALS symptoms and a peculiar little peptide molecule called lunasin. It was first isolated and identified in 1987, but its exact purpose puzzled scientists for years. Found naturally in soy, lunasin’s unique properties weren’t known until relatively recently, when a team of researchers led by Professor Ben O. de Lumen, Ph.D. of the Dept. of Nutritional Sciences and Toxicology, University of California, Berkeley started testing in 1999. As it turns out, the lunasin peptide seems to slow- and in some cases even reverse- the progression of muscle weakening indicative of ALS.
Until very, very recently, the lunasin molecule was prohibitively expensive to synthesize. This made studying its properties difficult, until a method was developed to extract lunasin directly from white soybean flake- a byproduct of soy production already widely used to produce soy flours, meals, and similar commodities.1 With the widespread availability of soy, studying lunasin suddenly became a whole lot easier.
In 2013, a man named Mike McDuff started a regimen of the peptide after a 2012 ALS diagnosis.2 His quality of life rapidly declined after the disease was identified. He could no longer walk, raise his arms, or even eat on his own. Speaking became an ordeal. Three months after the lunasin regimen, however, McDuff started to notice the impossible- improvement. Not much, mind you, but inch by inch, little by little Mike McDuff has regained the ability to eat on his own and speak clearly again. Other patients have shown promise as well, bringing some much-needed hope to an otherwise bleak subject.
Today, ongoing studies hope to positively confirm what many have already observed.3 Much, much work is needed before lunasin can be considered an official treatment for ALS. Studies lead to trials, trials lead to more trials and federal involvement, so it’s bound to be a long road. Progress takes time, but it seems research is moving in the right direction. Fingers crossed.