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. Aleksandra Ilijin was the 2012 SSMF Scholarship recipient. We asked her a few questions about how the scholarship has made a difference in her life.
Why did you apply to the SSMF?
I found out about this opportunity at the European Haemophilia Consortium (EHC) Conference where I met the WFH officer for Europe. When I got back home I read about the SSMF online and decided it would be great chance for me to get to know the bleeding disorders community better. I didn’t think I would be chosen—but I was! That was my first year of real engagement in the Serbian Haemophilia Society. I had years of experience volunteering in different non-governmental organizations (NGOs), but very little in the bleeding disorder community, so I wanted to learn. And if I remember correctly, that is exactly what I wrote in my application form.
What are the challenges facing women in bleeding disorders research today?
There are so many of them. From my point of view, the main challenge is the image of the bleeding disorder community itself. The focus is on hemophilia and traditionally it is considered to be a male disorder. And for many years it was like that. Now we need to reach equality between men and women.
Why do you feel it’s important that this scholarship be awarded to a woman?
I think it is important because we need to make sure we have female participation when we advocate for the bleeding disorders community. And in order to achieve that, we need to give women a chance to get all the skills they need. Also, the SSMF is a way to give women the recognition they deserve and make a place for them in the community.
How did receiving the scholarship impact your involvement in the bleeding disorders community?
It gave me much needed push. I was already determined to make a change in the Serbian Haemophilia Society, but I was very insecure. Especially because I am a carrier who has never faced the bleeding aspect of my disorder. I was afraid I wouldn’t be the right person to represent the community. So winning the scholarship opened the door to a whole new world for me.
What was the most important thing you learned from your participation in the WFH World Congress?
I learned a lot, but the most important thing is that I gained a wider perspective. When you stay too long in your own mindset, you start to think that your situation is the worst and you can’t get out of that way of thinking. Being a part of this huge event opened my mind to how people live with a bleeding disorder in other countries—especially countries in the developing world. That helped me to learn more about the global community, and it also helped me to learn more about myself.
If you had a single sentence of advice to give the next recipient of the SSMF, what would you say?
Stay open minded, try, fail, learn and always bear in mind that every single thing you do is a huge contribution to our community, because our little is someone else’s whole world.
Are you still involved in a bleeding disorder organization and if so, what is your role?
In Serbia, I am Chairwoman of the Youth Committee of the Serbian Haemophilia Society. I am also involved in the bleeding disorder community on the European level as member of the EHC Youth Committee and EHC Women’s Group.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Aleksandra Ilijin, and the many other SSMF scholarship recipients, please click here.