archyworldys

Esteban Bullrich leads a fundraising event for the fight against ALS: the details to attend and collaborate

The former senator will lead a solidarity event and will be accompanied by Diego Torres and Carlos Páez Vilaró

Former Senator Esteban Bullrich will head this Tuesday in the City of Buenos Aires the event called “Life is Today”, together with the speaker Carlos Páez Vilaró, survivor of the Los Andes tragedy, and singer Diego Torres, with the objective of raise funds to create the first center specializing in the treatment of Amyotrophic Lateral Sclerosis (ALS)the illness that forced him to give up his bank.

The match will start at 7:00 p.m. at the stadium. Movistar Arenalocated at Humboldt 45, in the neighborhood of Villa Crespo, and will be the closing of the month of the Fight against ALS and one week before the World Day of this disease will be commemorated, on June 21.

The organizers reported that tickets can be purchased in advance, and with a credit card, through the platforms www.movistararena.com.ar y www.entradauno.com, for a cost of 1,000 pesos. In addition, t-shirts alluding to the meeting can be purchased at the venue, all of which will serve for fundraising.

during the meeting Bullrich will tell his story of resilience and how he decided to face his disease, to serve as a guide to the approximately 3,000 ALS patients in our country.

The event will take place at the Movistar Arena, from 7:00 p.m. (Event "The life is today")
The event will take place at the Movistar Arena, from 7:00 p.m. (“Life is Today” event)

Recently, the also former Minister of Education launched a Foundation that bears his name, with the intention of financing research under the slogan that the Amyotrophic Lateral Sclerosis (ALS) “It has a cure, we just have to find it,” he said.

Tuesday’s event has the objective of collaborating in that fight and obtaining the necessary funds to the creation of the first specialized care center for this disease, that serves for improve the quality of life of patients. All proceeds will go to the Foundation with that goal.

“The life is today” It will feature the special participation of Páez Vilaró, a survivor of the Los Andes tragedy, when a plane with 45 people on board crashed in the Cordillera at an altitude of 4,200 meters. Of these, 16 managed to survive the 72 days they remained in the middle of the snow, one of them was the son of the Uruguayan painter Carlos Páez Vilaró.

Also, The singers Diego Torres and Silvina Moreno will be part of the meeting, the first of which will be in charge of closing the act with a musical show. One of the charlas will be provided by the entrepreneur Mateo Salvatto, the young entrepreneur known for his application Háblalo, which helps people who for various reasons cannot speak to communicate. The app currently assists 60,000 people with disabilities in 53 countries around the world. The meeting will be conducted by the journalist José Del Río.

The also former Minister of Education launched a Foundation that bears his name with the intention of financing research on ALS (Event "The life is today")
The also former Minister of Education launched a Foundation that bears his name with the intention of financing research on ALS (“Life is Today” event).

The Esteban Bullrich Foundation reported that people who cannot attend the event and want to collaborate with the initiative can do so with donations through Paypal or with transfers to the account identified by the Alias DONATE.FUNDATION

On the stadium website Movistar Arena You can get more information about how to get there, available income, means of transportation and parking.

ALS destroys the nerves that control movement and most patients die within 5 years of diagnosis. When a person can no longer speak, they can use an eye-tracking camera to select letters on a screen. Later in the disease progression, they can answer yes or no questions with subtle eye movements. But if a person prolongs her life, You can spend months or years being able to listen but not communicate, since you can’t even move your eyes.

Bullrich, still a senator, announced last November the launch of his own foundation, which, among other objectives, seeks to finance research and innovation for the treatment and cure of ALS. Bullrich had confirmed that he suffers from ALS in April 2021, when he was diagnosed after having consulted several doctors and having undergone “all the necessary studies”, according to a letter he sent to the authorities of the Upper House, just found out about his condition. In December of that year he decided to resign his bench.

The disease Bullrich is fighting against is ALS, which destroys the nerves that control movement and most patients die within 5 years of diagnosis
The disease Bullrich is fighting against is ALS, which destroys the nerves that control movement and most patients die within 5 years of diagnosis

On June 13, Canada approved a new treatment against ALS, which generated hope in thousands of patients. One of them was Bullrichwho immediately announced through a son of Twitter that he would ask the National Administration of Drugs, Food and Medical Technology (ANMAT) to approve AMX 0035, the new drug to which the United States FDA would give its approval. approved next September.

As a patient with ALS, I will be sending a letter asking ANMAT to please review its processes and approval times and not only approve medications from the countries called list one (United States, European Union and Japan). ALS patients do not have the time to wait for so much bureaucracy. The Argentine laboratories have everything ready to be able to produce this medication here and help us have more time for our loved ones,” he said. “Make this news live it with the joy we deserve and not with the disappointment of feeling that it will not arrive so quickly in our country.”

Then the ANMAT published a statement in which it specifically stated regarding this medication and the procedure to be able to approve it by clarifying that “currently no laboratory has submitted information for evaluation before the ANMAT.”

This National Administration informs that up to now no laboratory has formally presented the documentation corresponding to the AMX-035 product for its evaluation. The mentioned product was recently authorized by Health Canada Agency under special conditions for the treatment of Amyotrophic Lateral Sclerosis (ALS). As happens in other agencies in the world, the presentation of information for this type of case can be done before the ANMAT within the framework of the regulations established for special registries. This allows for a dynamic and abbreviated evaluation and registration process. Currently, 34 medications for various pathologies are registered in the country under this figure, ”said the health control agency.

KEEP READING

What did ANMAT say about Esteban Bullrich’s request to approve a drug against ALS
Esteban Bullrich presented the foundation with which he will seek to help ALS patients
What are the treatments used against ALS today?

Trending