International Niemann–Pick Disease Alliance
This week Cláubia Viegas Bender, co-founder of INPDA member group Niemann-Pick B-RS, completed her master’s degree with a project focused on ASMD Niemann-Pick disease type B. We are all hugely proud of her achievement, and we hope you will join us in wishing her congratulations! Claubia writes:
“…thanks to my Sister. To the existence of Isadora. To my advisor, Fernanda Visioli, for believing in me and my ideas. For their competence, their knowledge, their generosity, but especially their empathy and sense of humanity. You are an example to me. I’m your fan and follower. Thank you to Niemann-Pick UK, for allowing me to join you in England back in 2014, I could have never imagined to be welcomed in such a way…you served as a great example of what could be done for my projects on Niemann-Pick in Brazil. Thank you for showing me a way to try to change the reality of clinical research in this area in my country.
Special appreciation has to be sent out to Jim Green, and to Toni Mathieson, the bravest woman I know. Toni is an example that pain can be turned into work that changes lives; I want to be like you when I grow up! Thank you so much for your support.
To the International Niemann-Pick Disease Alliance (INPDA) for their ongoing trust and support, thank you. It is an honour to be part of this group. To Roberto Giugliani, you have all of my admiration, respect and thanks for being who you are – you are the best! Thanks to all your staff and other genetics professionals at the Hospital de Clínicas (HCPA) and especially to Ana Paula De Boher. To David Priestman, thank you for the encouragement across the years. To Dr. Melissa Wasserstein, a researcher I admire a lot. To all the teachers I had the privilege of learning from, especially those in pathology.
Thank you to those who gave me a chance to talk about ASMD Niemann-Pick disease type B and to tell Isadora’s story. To the examining board teachers Deise Ponzoni, Marcia G de Oliveira and Laura Campos Hildebrand. Thank you for being there for me, and for your knowledge in this area. To colleagues who helped me in my Master’s subjects, week in week out, assisting me to interpret slides on histology and helping me with reports for my research project, thank you. To my friends, and to all of those who helped in one way or another to bring visibility to NP-B…finally allowing the process of a clinical research protocol in Brazil, thanks to Antoine Daher of Casa Hunter. Thank you to my parents, and to all others who encouraged me to get here. To all my patients, thank you for your understanding, patience and confidence in my work. My pursuit of knowledge is ultimately for you, and especially to all rare NP-B patients. This study was only possible because you agreed to participate. You are the reason for everything. Thank you…”
#NiemannPickBRS #INPDA