WFH NETWORK

Nikole Scappe: Q&A with a Susan Skinner Memorial Fund recipient

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. Nikole Scappe 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?

During the last 12 years, I have listened to thousands of individuals’ stories on how their bleeding disorder has negatively or positively impacted their life. Sadly, when I started volunteering in the community, I felt that most of the stories were negative—especially for undiagnosed women with bleeding disorder symptoms. My own experience of a diagnosis with inadequate care made those stories very real for me. Seeing the fear, frustration, and disappointment in those people drove me to become an advocate, volunteer, and mentor. I don’t feel anyone with a chronic illness should go without treatment. These stories lit a fire in me. I found it hard to imagine that so many women and men were going without treatment—or getting inadequate care—as was my case. So instead of complaining, I decided to take action.

For the first couple years of my volunteer work, I focused on helping people locally at the Western Pennsylvania Chapter. My chapter introduced me to the National Hemophilia Foundation (NHF) within the U.S., which in turn exposed me to opportunities at the national level. After joining the National Youth Leadership Institute (NYLI) program developed by the NHF, I took every opportunity that came my way to speak at events, volunteer, and take on new leadership roles. I gave up my weekends, missed parties, vacations, and pulled all-nighters to volunteer. Some people look their whole life to find their purpose. I am sure I have found mine as a leader and advocate in our community.

What are the challenges facing women in bleeding disorders research today?

The challenges women are facing today are getting an actual diagnosis, and receiving care that addresses and validates their symptoms. Too often I hear stories about doctors dismissing patients’ needs because of their gender or bloodwork. The diagnosis aspect of von Willebrand disease (VWD) is one of the biggest issues women with bleeding disorders face today. On average, it takes six to nine years for a woman to get a proper VWD diagnosis. Even for those who have had a medical diagnosis of VWD, much debate still remains on what adequate treatment really looks like. Until this debate about diagnosis and treatment is resolved, research dollars will not go towards studying this important group of patients.

Why do you feel it’s important that this scholarship be awarded to a woman?

I feel it is important that this scholarship be awarded to a woman because we are the least visible group in the bleeding disorders community. In other countries, some doctors don’t acknowledge the fact that women have bleedings disorders. Making our presence known across the globe is vital to educating the general population and doctors about women with bleeding disorders.

How will receiving the scholarship impact your involvement in the bleeding disorders community?

This scholarship will impact my involvement with the bleeding disorders community on a global scale. It will provide me with an opportunity to meet, learn, and collaborate with the WFH, and youth from the global bleeding disorders community.

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 would like to participate in national member organization (NMO) training to get a better understanding of the issues being faced in the bleeding disorder community of the U.S., as well as those in developed and developing countries. The WFH Global NMO Training provides participants with the opportunity to learn and grow as leaders, which I feel is very important, because being aware of youth issues, succession planning, and how to be a better leader in general is critical to anyone who wants to grow in our community. I see NMO training as a way for me to get the tools that will allow me to give back and help on a larger scale. I would also like to see how some of the underdeveloped countries run their programming with so little resources. If you work hard enough you can survive with what you are given, which is exactly what many NMOs do.

I would like to participate in the WFH 2018 World Congress for a variety of reasons. Attending will allow me to be part of sessions that will discuss the most relevant news and scientific discoveries in the bleeding disorders community. As a volunteer at the WFH 2016 World Congress in Orlando, I saw how many interesting sessions there were. Unfortunately, my volunteer duties came first, so I was not able to attend most of the sessions, so going to the Congress as an attendee would be wonderful. There is so much to learn, and so many individuals who are eager to teach and learn from you as well.

Attending the WFH General Assembly is a once in a lifetime opportunity—and something I have always hoped to witness. I have been at NHF Medical and Scientific Advisory Council (MASAC) Meetings, NHF board meetings, summits, and other corporate meetings, but I have never had the honor of participating in such a prestigious meeting as the WFH General Assembly. The fact that I would be in the room with key individuals in the community will be electrifying. Watching NMO leaders discuss the WFH constitution, WFH membership, new NMOs and future Congress bids seems very exciting to me. There is so much I can learn from the WFH General Assembly. I think it will help me become a better leader. I also think it will help me realize my dream of applying for the WFH USA Board of Directors.

What’s the first project you’re planning on working on once you receive the scholarship?

The first project I hope to work on is developing an international young women’s leadership program. There are many leadership programs for young men with hemophilia, but there are not many for young women with bleeding disorders. Helping strategically plan and organize a global event dedicated solely to women with bleeding disorders is something I hope to be part of.

To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Nikole Scappe, and the many other SSMF scholarship recipients, please click here.