From capital to countryside. Living with ALS in Brazil

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Aug 23, 2019
By the Philips Foundation team
​​​​​​In partnership with the Philips Foundation, travelling project "Living with ALS" brought information and know-how to the people in Sao Paulo and four other cities located in the countryside of Brazil, aimed at reaching the people who are affected by the disease.
From capital to countryside. Living with ALS in Brazil

From March 12th till April 12th, the Paulo Gontijo Institute (IPG), in partnership with Royal Philips, through the Philips Foundation, organized a road trip to increase societal awareness about ALS in Brazil and provide free care and diagnosis to the people showing signs of ALS symptoms.

 

​ALS, or amyotrophic lateral sclerosis, is a rare disease that affects nerve cells in the brain and the spinal cord. A disease, unfortunately, still widely unreported in Brazil. Although diagnosis of ALS in the country does happen – an average of 12,000 patients are being diagnosed in a year – there are still too many people left undiagnosed and there is still too little awareness on how this rare disease should be treated.

 

Adilson Custódio Pinto, ALS patient and living in the state of São Paulo described how problematic it already can be for the people living near the economic heart of Brazil: "I live near the biggest city of Brazil, and it took a year and half to have a diagnosis. Imagine the people who live far away? This is the essence of the project, bringing information to those who do not have it."

 

That's why "Living with ALS" focused on educating health professionals, patients, and family members who are familiar with the disease, but also those who have never heard of it. Starting from São Paulo, the 'traveling project' went to Campinas, Ribeiro Preto and Sorocaba, located in the countryside of Brazil where around 30 million people live.

 

"Royal Philips, through the Philips Foundation, is participating in this important project to increase awareness and show that ALS patients can have a quality of life during the evolution of the disease." – ​Ana Carolina Delphino, Senior Product Specialist, Philips

Results and testimonials


In a well-documented video of IPG, through the testimonies of the people who were involved, it really shows what impact such an 'awareness road trip' can have on people affected by ALS in the four selected cities:
Video of IPG
It is fair to say that "Living with ALS" helped Brazilians to see that there's a way of life after being diagnosed with ALS. After one month traveling from Sao Paulo to the nearby cities, around 1,020 people in 4 municipalities were reached and registered, and an audience of 1.3 million were impacted through the press, disseminating the know-how about Amyotrophic Lateral Sclerosis (ALS).

Living with ALS in Czech Republic


As ALS affects people globally, a project in Czech Republic picked up where Brazil left off. In this project, also supported through the Philips Foundation, a community center for ALS patients will be renovated in Prague, where nurses and physicians will receive training about diagnostics and treatment of the disease and the stock of medical aids will be improved.
 

On top of it, a dedicated marketing team from Czech Republic will be putting their minds and hands to work and use their expertise to help organize and communicate the Prague City Swim, an event carried out by several ALS organizations in the world to raise awareness. The event will take place in September, where funds will be raised for global research and the personal care for ALS patients in the Czech Republic.
 

To read more about the Prague City Swim, please click here

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