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United against ALS: the Symposium

When I left my clinical teaching position back in May to pursue the full time research on music therapy for people with ALS, it was exciting, but, at the same time, triggering all my inner insecurities. Was it the right decision after all? How the long distance research is supposed to work? Will I be able to fundraise enough to cover the tuition and travels? Will I actually have the support of multidisciplinary team to conduct the field work stage? What evidence will I find as I dive even deeper into the literature and field work?

Since May I’ve learned a lot. Among other things, I’ve learned that conducting a PhD research outside of a lab and a classroom may, in fact, feel extremely isolating.  All you have is the “research guidelines” and the PubMed of literature. Ultimately, there is no person you can turn to for answers: you have to come up with them yourself. And there is a lot of questions: ALS is a tricky disease and is abound with mysteries.

28th International Symposium on ALS / MND and 25th Annual ALS Alliance meeting happening these days in Boston has been a chance for me to realize that it is ok to not know and – even – that it is ok to make mistakes, big time. Because every failure and every new question bring more knowledge and more hope. It has been a much necessary respite: to meet the people whose names and ideas became a part of my world years before through scientific exploration, to be able to ask questions and to share perspectives, smiles and hugs, to listen to the stories and to build bridges of support and care across the world. We all joined this fight for various reasons, but here we stand, united, ready to continue bringing the change.

 

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I would like to thank ALS Foundations “Live Now” for sponsoring my participation in this event. Please kindly consider supporting our further work.


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