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. Shantelle Winslow is the 2017 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 applied because I am very passionate about the bleeding disorders community and I feel like it has given me so much and I want to give back. I believe that by getting the Susan Skinner Memorial Fund (SSMF) endowment, I will be able to foster a stronger community in my home hemophilia chapter as well as in the national bleeding disorders community.
What are the challenges facing women in bleeding disorders research today?
There is still a stigma attached to women with bleeding disorders. I remember growing up and going to a bleeding disorders camp when I was young and being told that I didn’t have a bleeding disorder because I was female. There is also the additional challenge that the main bleeding disorder that affects women—von Willebrand disease (VWD)—isn’t as well understood as hemophilia. This means that research in VWD is starting at a much more basic level than research in hemophilia. I believe that the stigma around women with bleeding disorders is only now starting to be broken down.
Why do you feel it’s important that this scholarship be awarded to a woman?
It is important because I feel like women are not represented well in our community. I think that there is a disproportionate amount of research and talk concerning men with bleeding disorders. I believe that women are going to be the new leaders of our community now that society in general—and specifically the bleeding disorders community—is becoming more progressive.
How will receiving the scholarship impact your involvement in the bleeding disorders community?
This scholarship will give me a more global mindset. I understand that here in the United States the main roadblocks to healthcare are not the same ones that face others in different nations. I know that it is important to see what others go through so that we can foster a more collaborative mindset that will hopefully be beneficial to all parties involved. I also come from a more rural area of the United States, so I think that I will be able to better serve my local community by interacting with other nations that have had to work to overcome getting healthcare to small specific populations.
What do you hope you’ll learn from your participation in the WFH Global NMO Training, the WFH 2018 World Congress, and the Annual Meeting of the WFH General Assembly?
I hope to learn about how other nations and their young leaders tackle challenges such as getting their youth involved in their local bleeding disorders community; how they deal with getting accurate diagnoses in small populations; and how they advocate for themselves in situations of political and economic uncertainty. I want to learn about what other leaders are doing that has worked as far as engaging their young, unmarried, or childless adults, because I feel like that is an area where my local and national community could gain strength. I want to learn about how to best engage with the populations of undiagnosed and unaffected people. But, mostly I want to be see how this global community works. I hope that I can contribute something to the meeting.
What’s the first project you’re planning on working on once you receive the scholarship?
I plan on working towards engaging the young, unmarried, or childless adults in my local community, and use my experiences there as a template for engaging the same population on the national scale. I feel like this is an underrepresented community. The bleeding disorders community in the United States has amazing educational programming and engagement for youth and for families with children. However, I feel like this subset of the population—which I am part of—is not being as well served as it could be. I plan on partnering with my local hemophilia chapter to help support them on education, help them with holding events, and hopefully help them develop a strong social media community.
To find out more about the Susan Skinner Memorial Fund (SSMF) Scholarship, Shantelle Winslow, and the many other SSMF scholarship recipients, please click here.