ALS awareness

A Brief History of ALS Awareness

The ALS Treatment website is dedicated to informing people about the disease amyotrophic lateral sclerosis, with the aim of increasing understanding about all aspects of this disease. Thanks to the research efforts of many dedicated scientists and health professionals over the years, we now know a lot more about ALS than we ever did before, but there is still so much left to be discovered.

Whilst ALS is a relatively rare disease and therefore not well understood or very familiar to many people, awareness efforts have certainly succeeded in increasing understanding of the disease among the general public.

Recent social media phenomena, such as the ALS Ice Bucket Challenge, have without doubt helped to increase awareness and improve understanding of amyotrophic lateral sclerosis, whilst raising significant funds for further research in the process.

When Was ALS First Discovered?

Jean-Martin Charcot stamp
A postage stamp of French neurologist Jean-Martin Charcot

Descriptions in literature that mention the symptoms of ALS date as far back as 1824 but it wasn’t until 1869 that French neurologist Jean-Martin Charcot connected the dots and related these symptoms to neuron damage.

It was Charcot who coined the name amyotrophic lateral sclerosis when he published a paper in 1874. In France, it is still often called ‘Charcot’s disease’. The word amyotrophic comes from the Greek language and translates into ‘no muscle nourishment’.

It is not until relatively recently, however, that we have began to really understand a lot more about this disease and how is progresses.

Lou Gehrig’s Disease

In America, ALS is commonly known as Lou Gehrig’s disease, named after the baseball player who developed the condition in the late 1930s and died of it just a few years later. Gehrig was known as the iron man of baseball and was famous for recovering from a number of injuries.

In 1939, he realized he wasn’t playing well and that there was something physically wrong. After having a medical check-up, he was diagnosed with ALS. This was the first time that a national celebrity had brought the disease to the public’s attention and his diagnosis did great deal to raise awareness in America and to some extent, across the world.

The speed of which the disease progresses was typical in Gehrig’s case and he died just a couple of years after his original diagnosis. Today, the statistics tell us that around half of those diagnosed with ALS will die within three to five years after being diagnosed.

Ice Bucket Challenge

Two men taking part in the ALS Ice Bucket Challenge
The ALS Ice Bucket Challenge helped to significantly raise awareness of the disease

In 2014, a viral sensation known as the ‘Ice Bucket Challenge’ hit the online world. The general public, as well as high profile celebrities, began filming themselves being doused in ice water to raise money for ALS research.

Each participant was encouraged to donate money to the ALS Association and then nominate three other people to undertake the challenge. Estimates suggest that the Ice Bucket Challenge globally raised more than $115 million for ALS research between the start and end of 2016.

ALS Research

Since it was first discovered, there has been a lot of research undertaken to try and understand what causes ALS and much of this research has been carried out over the last decade. Whilst there is still no cure for the disease, our understanding of it is certainly improving.

A study in America looked at the mechanism of how ALS develops. It suggests that there seems to be an imbalance in nerve cells between the cycle of breakdown and synthesis of new material. Waste can build up because of mutated proteins that interrupt this process. The genes that are mutated are called UBQLN2 and UBQLN4 and understanding their role better may have implications for therapeutic interventions in the future.

Another piece of research has looked at the role of the protein membralin in ALS and there is the hope that gene therapy may be a potential therapeutic approach. Gene therapy was used to treat mice with ALS type symptoms and it was shown to improve their condition.

A lot of research has also focused into the link between ALS and genes. Whilst 90% of cases seem to have no genetic component, 10% have been found to be familial. This is an area of research that is still in its relative infancy but many specialists believe the connection between gene mutations and the likelihood of getting the disease is a lot stronger than previously thought.

Whether a cure for ALS will be discovered in the next few decades or not remains to be seen. However, the findings from recent research are certainly promising and thanks to on-going funding efforts, this research can continue to take place.