I'm a 49 years old. I`m a medical doctor and Im work caring for pacients with neuromuscular disease and I`m a clinic director of Brazilian Muscular Dystrophy Associaton. I`m a fighter in my country and I founded a group of parents of DMD. My group and I succeeded the Portaria 1531 (a kind of directive law) that gives all muscular dystrophy patients the right to have respiratory assistance through bilevel noninvasive ventilation as soon as the clinical situation determines the necessity.
About my family:
I have 2 daughters and a son. My son has 23 years old and he has DMD.
My husband is the author of the site www.distrofiamuscular.net and one of the founders of the FFF (fight for the future).
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
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I'm glad too,Joanne. Perhaps in the next year we will travel to the United States, or in the end of this year, I don't know. Who Knows...a meeting among our family. Our fight in Brazil is very hard but I am seeing some progress (very interesting) in the treatment of my pacients( my private pacients and the Brazilian Muscular Dystrophy Association'pacients). I need write about it, it's very important! Ana
AnaLucia! I am so glad that Julie has kept us all together. Are you coming to NY anytime soon? Leonardo and your girls look so good and so happy. You are wonderful people. I am still learning my way around this site (I can't spend too much time) and I look forward to seeing you on the board...