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Em 2009 fui diagnosticado com uma doença do neurônio motor (DNM) Trata-se de uma doença neuromuscular, progressiva, degenerativa e sem cura. Mesmo assim insisto que vale a pena viver e lutar para que pesquisas, tratamentos paliativos, novos tratamentos cheguem ao Brasil no tempo + breve possível, alem do respeito no cumprimento dos nossos direitos. .

18 de jan de 2015

Petição para liberação do Genervon 604 no tratamento da ELA


Por Wallace Chagas

Oi gente, tudo bom?

Está rolando uma petição criada pelos membros do fórum ALS TDI (http://www.als.net/forum/) onde eles querem que o FDA libere o uso do Gernevon 604 imediatamente  para os pacientes.
A petição foi criada no momento em que o pessoal da própria Gernevon pediu para que os pacientes fizessem  uma pressão.
Os resultados do TRIAL 2A do Gernevon foram tão positivos que agora a comunidade está correndo atrás dessa oportunidade que poderá (e irá, na fé de Deus) mudar a vida de muitos pacientes..

A petição pode ser acessada no link abaixo:
https://www.change.org/p/u-s-food-and-drug-administration-a…


Approve Genervon GM604 for all ALS patients immediately. We request that GM604 be advanced to conditional approval in a post-marketing surveillance program.

Over 30,000 Americans suffer from amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease) and even more worldwide. 50% of those with ALS will die within 2 years and the majority of the rest will die within 5 years. Words can't describe the devastation this disease causes the patient with ALS and their families. It is the worst disease anyone can get.
Please watch the video in this petition to see first hand how this affects patients and their families. Anthony Carbajal is currently fighting ALS and has lost several family members to the disease. His mother, as you'll see in the video is completely paralyzed.
Since the majority of ALS patients face certain paralyses and death, ALS patients, their families and the general public agree that ALS presents a compelling case for an exception to the usual process. 
Genervon GM604 has demonstrated safety in trials and has demonstrated significant efficacy. ALS patients will die during the time it takes to conduct a Phase 3 trial. Imagine if it was your sibling or child suffering from this disease. Imagine them getting weaker, losing MUSCLE MASS, losing the ability to coordinate movement, imagine the despair and fear they feel, losing your ability to speak, swallow and breath. If you were in my shoes you would do almost anything to save your loved one. Help us save my brother Wissam Majed and the thousands of people suffering from ALS. GM604 can stop the progression and save many people. 
Approve Genervon GM604 for all ALS patients immediately. We request that GM604 be advanced to conditional approval in a post-marketing surveillance program. We understand that the responsibility of the FDA is to INSURE that drugs and treatments are safe and effective for the public but in this case patients with ALS are going to die anyways. Please show some compassion approve GM604 immediately.
Sincerely,
Jehad Majed, the 30,000 ALS patients and their families

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OBS:
1-    Eu acho que  ja postei os resultados do estudo do Gernevon aqui: (https://www.facebook.com/superwallasse?fref=ts)

2-    Uma vez que o medicamento for aprovado lá, movimentaremos o Brasil para que o remédio chegue aqui também.


Nota do Blog: 
http://falandosobreela.blogspot.com.br/2014/08/genervon-anuncia-dados-do-ensaio.html