“The Northeast Holding Hands.” This was the theme of the II International Symposium on Amyotrophic Lateral Sclerosis (ALS), which took place between November 24 and 26, in Maceió. An initiative of the Hermerson Casado Gama Institute, the event aimed to discuss and present research related to the disease.
Within this context, about 30 researchers from the Health Technological Innovation Laboratory (LAIS) participated in the symposium, where they presented their work developed for the revELA project, in the axes: technology, care and neurology.
During the opening ceremony, Professor Hélio Hékis stressed the importance of this research for improving the quality of life of ALS patients: “Everything we do at LAIS is with love. And it is with this love that our students develop works, such as the production of orthoses and prostheses, to help patients who have this disease. It is a disease that still needs to be studied and we are in this together. ”
For the representative of ALS institutes in Brazil, Professor Acary Oliveira, many steps have already been taken in search of cure of the disease, but much is yet to come: “It is a rare disease, only between 2% and 5% of the world population presents the evil. As
Neurologist, I have been following patients for years, I see many progressing, eager to live and this is what motivates me to continue in this cause. Events like this, promoted by a patient with ALS who had everything to give up but who is still struggling, give us all a new boost. We will continue together for healing. ”
Professor of pharmacy at the Federal University of Alagoas (UFAL), Marcelo Duzioni, said drugs are important, but agrees with Dr. Acary: “This symposium is important because it brings together academy, industry, scientists, patients. We
It promotes strengthening the look at a rare, incurable disease. Of course we will continue to search for remedies that bring healing. But the important thing to highlight here is the lesson that these young people, like the researchers present here, have to learn. Dr. Hemerson was able to unite all and show the will to live. Let’s fight for it, ”he concludes.
The revELA project was initially called “Autônomus”, a proposal that aimed to free ALS patients who can no longer communicate from the need to use expensive equipment. After Autonomous, other
Proposals for the disease also emerged, such as “An Angel for Her” and “Bionic Eye.”
Currently, the project is developed in partnership with the Ministry of Health and the Federal University of Alagoas (UFAL). The new phase of revELA brings together the first three ideas for the disease and goes beyond, encourages research with active and passive orthoses, motor and respiratory bioreaction, technologies for alternative communication, automation and nutrition devices.
Amyotrophic Lateral Sclerosis (ALS) is a disease that affects the nervous system in a degenerative and progressive manner and causes irreversible motor paralysis. Patients with the disease experience gradual paralysis and early death as a result of the loss of crucial abilities such as speaking, moving, swallowing and even breathing.
There is no cure for Amyotrophic Lateral Sclerosis. Over time, people with disease progressively lose their functional capacity and care for themselves. Death usually occurs between three and five years after diagnosis. About 25% of patients survive for more than five years after diagnosis.
Since 2009, the Ministry of Health, through the Unified Health System (SUS), has provided integral care and free medication to patients with this disease, based on scientifically proven evidence.