About 30,000 people in the United States are affected by amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, a neurodegenerative condition that damages cells in the brain and spinal cord needed for movement.
A team of researchers from the Harvard John A. Paulson School of Engineering and Applied Sciences (SEAS) and Massachusetts General Hospital (MGH) has developed a soft robotic wearable that can significantly assist with upper arm and shoulder movement in people with ALS.
The results of the study were published in the scientific journal Science Translational Medicine.
Walsh says the soft wearable is light on the body, just like a dress to the wearer. “Our vision is that these robots should function like clothing and be comfortable to wear for extended periods of time,” he says.
“Soft robotic wearables are a major advance on the path to truly restored function for people with ALS. We are grateful to all the people living with ALS who participated in this study: it is only through their generous efforts that we can make progress and develop new technologies,” says Paganoni.
According to the rare disease observatory: “La amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that leads to a degeneration of motor neurons and causes total paralysis. There is currently no cure and the outcome is ominous. The incidence is about 1-3 cases per 100,000 inhabitants per year. In Italy, at least 3,500 patients and 1,000 new cases are estimated each year. The prevalence, i.e. the number of cases present in the population, is increasing: this is thanks to treatments that allow the patient’s life to be extended.
Amyotrophilic Lateral Sclerosis (ALS) is a neurodegenerative disease that appears in most cases after the age of 50 and leads to a degeneration of motion neurons or motor neurons. The disease is also known as Lou Gehrig’s disease, after the famous American baseball player who was affected, or as Charcot’s disease, after the French neurologist who first described it in 1860.
In most cases, over 90 percent, the disease is sporadic and there is still no certainty about its causes despite numerous studies and many hypotheses have been put forward in recent years. 5 – 10 percent of cases are instead of familial ALS, that is, they have a history in the family. Its incidence is about 1 – 3 cases per 100,000 inhabitants per year.
Currently in Italy the exact number of patients is not known as the relative registers have not yet been completed. However, at least 3,500 patients and 1,000 new cases per year are estimated with a strong concentration in Lombardy, followed by Campania, Lazio and Sicily, even if this could largely depend on a greater diagnostic capacity of local hospitals.
The prevalence, i.e. the number of cases present in the population, is increasing: this is thanks to treatments that allow the patient’s life to be extended. However, currently there are no treatments capable of stopping the disease and the outcome remains ominous”.
President of AriSLa, Mario Melazzini, declared: ” The amount of information on ALS, collected in recent decades by researchers, is truly significant and such as to allow us to affirm that answers for the sick could soon arrive. I am thinking, for example, of the discoveries and technological innovations that have made it possible to bring innovative therapies to the clinic and which have demonstrated their validity on other neurodegenerative diseases, such as for example that with antisense oligonucleotides.
The opening of various multitrial platforms, which allow for the simultaneous evaluation of different molecules and the optimization of the times and resources of clinical trials, also tell us that we are heading in the right direction.
We are well aware that the times of research do not correspond to those of the disease. On the one hand we must always bear in mind the characteristics of ALS, a progressive, highly disabling, complex and complicated neurodegenerative disease to understand and study.
A series of factors are involved in the etiopathogenesis of ALS which together contribute to its onset, such as genetic predisposition, environmental factors and lifestyle, some known but many others still to be investigated. On the other hand, there must be research conducted with rigorous methods, which takes its time to produce evidence and validated data and which cannot skip any ‘step’, otherwise there is the risk of stumbling and having to go back.
In the short term, I believe that the answers that will be able to be given will not be for all patients, probably only for a small group of patients with forms of the disease linked to specific mutations. But they will still be answers, and each of them will represent an expected and extraordinary goal.
The goal is to be able to give answers as soon as possible to all those who fight against this disease. It is important to continue to keep an eye on other degenerative diseases and on the studies dedicated to them, which can also offer useful information on ALS. And continue to share all knowledge about ALS, because synergy and teamwork between research groups is essential to win the challenge against ALS.
This year we will finance seven new, very innovative projects, with a total investment of 874,950 euros. There are 10 research groups involved, between Rome, Milan, Trento, Padua and Turin, which will make it possible to expand knowledge on mechanisms that are still little explored, linked to the onset of neurodegeneration and neuroinflammation, and will verify the efficacy of some molecules in slow the progression of ALS in preclinical models.
These seven projects have been selected from more than 100 proposals received in our call, the fourteenth since the birth of AriSLA, and have been identified following our selection process, based on the peer review method (or peer review), which provides that candidate projects are evaluated by international experts, who select excellent research on the basis of scientific value.
AriSLA Foundation was born in 2008, thanks to the synergy between four excellent realities of the philanthropic and scientific world, such as AISLA Onlus, Cariplo Foundation, Telethon Foundation and Vialli and Mauro Foundation for Research and Sport Onlus, precisely to optimize the available resources of the world non-profit and allocate them solely to the financing of the best research on ALS in Italy.
To date we have invested over 14 million euros in research, supporting 142 researchers distributed throughout the national territory, and 92 research projects of the highest quality, a figure also confirmed by the number of scientific publications derived from them, over 280, all with significant impact on the scientific community.
Our commitment is to continue to be alongside those who do research and to ensure that new results are obtained with concrete repercussions for patients.
In Italy it is estimated that around 6,000 people live with ALS. According to a study recently published in the scientific journal “Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration”, in Europe the prevalence appears to be between 4.9 and 10.5 cases per 100,000 inhabitants and the incidence between 1 and 3 new cases per 100,000 inhabitants/year . These data tell us that in Italy there are between 600 and 1800 new cases every year “.
The incidence of ALS increases with age, usually starting in your 40s and continuing until about age 80. However, this does not eliminate the likelihood that young people in their 20s and 30s are affected by ALS. ALS affects people of all races and ethnicities.
Most people with ALS die of respiratory failure, usually within 3 to 5 years of the first onset of symptoms. However, only about 10% of people with ALS survive 10 or more years. Such a differential rate of disease progression makes prognosis difficult to predict and treatments difficult to develop.
According to global estimates, there are four to six people out of 100,000 living with ALS at any given time. According to available statistics, approximately 6,000 people in the United States are diagnosed with ALS each year, and approximately 93% of patients in the United States are Caucasians, while 60% are males.
The incidence of ALS in the United States is estimated to be two in every 100,000 people, and there are thought to be more than 30,000 Americans who may be living with amyotrophic lateral sclerosis at any given time.
The incidence or number of new cases per year is increasing, with an estimated two new cases of ALS each year within a population of 100,000 people. Doctors have also noted reports that reflect an increasing number of younger patients with amyotrophic lateral sclerosis, however these studies require further investigation.
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