The Susan Skinner Memorial Fund (SSMF) endowment was established in 2007 by the World Federation of Hemophilia (WFH) USA to support the training, education, and leadership development of young women with bleeding disorders. Amanda Brito del Pino is a 2018 SSMF Scholarship recipient. We asked her a few questions about what it means to receive a SSMF Scholarship.
Why did you apply to the SSMF?
In a way, I applied to show my thanks for the support of the people who work with me in the Uruguayan Association of Hemophilia. They encouraged me to present my application, they believe in me and they felt that I could bring knowledge back to our community. And that’s what I think I’m doing now!
What are the challenges facing women in bleeding disorders research today?
I think one of the most important challenges we have is for women with bleeding disorders to be considered as patients even though we are symptomatic or asymptomatic carriers. Another one is to show ourselves as carriers of hemophilia without guilt or shame. It’s always difficult because you are not the one who suffers the physical pain, but you definitely suffer the emotional pain. As a mother with a son who has hemophilia, I really can say that my son’s physical pain is my pain too. During the WFH 2018 World Congress—and thanks to my involvement with the SSMF—I was able to meet some incredible women with von Willebrand disease (VWD) and I really think that their participation in the Congress made a huge difference in the female bleeding disorders community. A challenge we have is to work more with VWD patients to increase the awareness of their condition and to let their voices be heard.
Why do you feel it’s important that this scholarship be awarded to a woman?
In my opinion women should play a larger role in the bleeding disorders community. We are a very important part of the community and the SSMF scholarship allows us to participate in the WFH World Congress—which is such an important event. Nothing motivates me more than the possibility of improving my son’s health, and what could make things better for him and for other children like him is simply everyone working more with carriers. We definitely should use that strong feeling that carriers can feel for their condition and for their families to spread a message to communities.
How do you think attending the 2018 WFH World Congress will impact your involvement with the bleeding disorders community?
Attending the WFH 2018 World Congress changed my way of seeing the whole community. Now I have contacts from all over the world. I can learn from them, and we can share our learnings with other countries. I feel so grateful to my national member organization (NMO) and to the Susan Skinner family. I will work more than ever to accomplish the objectives we have in Uruguay and, of course, the whole community can count on me if there’s something I can do to help.
Can you share with our readers your most memorable moment (or two) from the WFH 2018 World Congress?
One of the most memorable moments for me was the lunch with Mark Skinner, his dad and a friend of the family. They were very nice and sweet with me and they shared some of Susan Skinner’s experiences as a mom of two kids with hemophilia. It was an unforgettable moment for me.
Another great experience was when I was listening to a story of a patient—a young man who really struggled hard with inhibitors and with obesity. I was hearing him, with attention and with my heart, and suddenly I just started crying, thinking of all the people who made it possible for me to be there listening to that incredible inspirational story. I would like to thank my parents, my husband, my son, the Uruguayan Association of Hemophilia, the WFH, and all the people who have helped me during the difficult moments in my life.
Now that you are back from Glasgow, what project will you be tackling next?
I’m in charge of communications at the Uruguayan Association of Hemophilia, so I’m trying to share some of the knowledge I learned at Congress with our social media community. I’m also working with other volunteers on an advocacy project and I would really like to create a project to work with women in the future. I’m also thinking about writing a book where I can share some advice on how to care for a child with hemophilia.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Amanda Brito del Pino, and the many other SSMF scholarship recipients, please click here.
