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. Ashley Taylor-Fowlie was the 2016 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 to the SSMF to learn more about being a young woman with a bleeding disorder, and also to get knowledge, resources and tools—especially knowledge from NMO Training—that I could bring back to New Zealand to be shared with our bleeding disorder community. I’m very thankful to the SSMF for giving me the opportunity to attend national member organization (NMO) Training and the WFH World Congress.
What are the challenges facing women in bleeding disorders research today?
The challenges we are facing are the diagnosis of women with a bleeding disorder, and global awareness of the fact that women can have a bleeding disorder. By having the chance to attend World Congress I was able to learn more about being a young woman with von Willebrand’s disease (VWD) and I was able to develop relationships and form connections with other women with bleeding disorders. This allowed me to strengthen my own awareness on women with bleeding disorders.
Why do you feel it’s important that this scholarship be awarded to a woman?
Personally, I think it is important for young women to understand that they are not alone. By attending a WFH World Congress, I was able to hear amazing inspirational stories from women with bleeding disorders, which not only increased my knowledge of my own medical condition but has also encouraged me to become more actively involved in my own bleeding disorder community.
How did receiving the scholarship impact your involvement in the bleeding disorders community?
By receiving the scholarship, I was able to attend NMO Training and the WFH World Congress which allowed me to develop skills, and also increase my knowledge and understanding of bleeding disorders. Receiving the scholarship also provided me with the resources I needed to become more actively involved in my bleeding disorder community.
What was the most important thing you learned from your participation in the WFH World Congress?
I was able to learn that it is possible to have a voice and an impact on the bleeding disorder community no matter your gender, age, race or bleeding disorder. Those who were speakers and attendees at the WFH World Congress were “real people” who have experienced the impact of a bleeding disorder and who have knowledge they are willing to share. I also had the opportunity to develop confidence and my presentation skills at the NMO Training, as I was given the opportunity to give a ten-minute presentation about our New Zealand Youth Leadership Program. I absolutely loved being able to share our Youth Program details with others, and enjoyed answering the questions they wanted to ask.
If you had a single sentence of advice to give the next recipient of the SSMF, what would you say?
My advice would be to make the most of this incredible opportunity, learn as much as you can, increase your knowledge and understanding, and network with as many people as possible. And take everything that you have learned and all the skills that you have developed back to your own NMO and put it into practice to improve the lives of other women, youth and families with bleeding disorders.
Are you still involved in a bleeding disorder organization and if so, what is your role?
I am the Youth Delegate and Secretary on the Central Region Branch Committee in New Zealand. Recently I organised a successful Central Region Youth Event. In February 2017, I attended the Haemophilia Foundation of New Zealand (HFNZ) Advanced Leadership Training Weekend. At that event, I gave a presentation about attending the Youth Leadership Training in Barcelona. Also, I am honoured to have been invited as a member on the WFH Leadership Advisory Committee. In April 2017, I attended the HFNZ youth camp as a group leader. That marked the first time the HFNZ invited young women with bleeding disorders to attend youth camp and the first time that women have been invited to take up roles as Group Leaders. At youth camp, I also had the opportunity to run a session on First Aid.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Ashley Taylor-Fowlie, and the many other SSMF scholarship recipients, please click here.