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. Michelle Cecil was the 2015 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 felt that the SSMF provided a phenomenal opportunity not only for networking and education, but to also strengthen my passion for the community. Attending the WFH 2014 World Congressin Melbourne further ignited this passion and showed me how much more there was to learn about the bleeding disorders community on an international level. The SSMF provides opportunities for young women to attend the WFH Global NMO Training, and the WFH General Assembly. Those events were things I was eagerly wishing to participate in so that I could become a better leader and advocate in my home state and country.
What are the challenges facing women in bleeding disorders research today?\
The biggest challenge facing women in bleeding disorders research is the epidemic of underdiagnosis. Often, I feel that women do not speak to their medical professionals about their symptoms and only their family and friends. This is problematic because if a woman has a family history of heavy bleeding symptoms, it becomes a part of their “normal” life. This is dangerous because if everyone they know has heavy bleeding, they believe that everyone must be like that, when in fact heavy bleeding is not normal. One of the most common bleeding disorders is von Willebrand disease (VWD), yet 9 in 10 people with it remain undiagnosed. We, as advocates, must work hard to help individuals learn about VWD and other bleeding disorders so that women and others do not have to silently suffer from symptoms that are not “normal” and are treatable. We have to encourage women and others to speak openly and honestly about the symptoms they are facing. We also need to speak with medical practitioners from around the world to help them understand the signs and symptoms of bleeding disorders as they pertain to women. We should be researching better treatments for women that do not make them sick when they take their medication, and create rhetoric that encourages women to speak up about what they are experiencing.
Why do you feel it’s important that this scholarship be awarded to a woman?
The WFH Global NMO Training, WFH 2016 World Congress participation, and the WFH General Assembly observation that the SSMF scholarship makes possible for recipients, enables young women from all over the world to gain skills and expertise that they can then bring back to their home countries. What is so amazing about this scholarship is that it recognizes women leaders from around the globe and gives them even more training to work toward developing and bettering the countries that they live in, volunteer for, and are active in. The men in our community have amazing opportunities through programs like Step Up Reach Out (SURO) and others to connect with people in the bleeding disorders community on a global scale, but women do not have the same resources available to them. This scholarship provides a critical experience for women to gain skills, connect with others, and bring light to the issues faced by women across the globe.
How did receiving the scholarship impact your involvement in the bleeding disorders community?
Receiving this scholarship was a dream come true for me! I applied twice for the scholarship before receiving it in 2015. In a way, not getting the scholarship for the WFH 2014 World Congress in Melbourne, Australia, was a blessing in disguise because it allowed me to reflect on issues that I thought may be present on a global scale and in my country. I raised funds on my own to attend the WFH 2014 World Congress and had a very special experience. When I received the scholarship for Orlando I knew that it would have the ability to increase my involvement—and by the end of the WFH 2016 World Congress I was able to increase my global connections considerably. The scholarship allowed me to see underrepresented populations in my country and around the globe and better understand their perspective on issues. It also helped me get connected to peers that I had worked with on projects and ignited my passion for the community to an entirely new level. I have continued to increase my involvement in the bleeding disorders community since attending the Congress in 2016.
What was the most important thing you learned from your participation in the WFH World Congress?
After attending WFH 2016 World Congress activities I realized that there are many issues that we as a global bleeding disorders community need to focus on in order to keep the amazing positive momentum we currently have going all over the globe. While the education, information, and connections I made were priceless I think that learning more about myself and what I want to do in life as a result of participating in Congress was the best gift. Once I receive my Masters in Public Administration in April 2018 I am hoping to continue working at a university helping students with disabilities and health issues as they transition into college living. My long-term goal is to use the combination of my residence experiences and bleeding disorders experiences to work at a bleeding disorders organization in youth programming.
If you had a single sentence of advice to give the next recipient of the SSMF, what would you say?
Be sure to take time at the end of every day to reflect on your day: who you met, what you learned, what can you do with that information when you go home—and write it down! Your time at the Global NMO Training, Congress, and General Assembly will go by so fast and trust me you don’t want to miss or forget a single moment—it’s a life changing experience!
Are you still involved in a bleeding disorder organization and if so, what is your role?
YES! I am involved with the Women’s Booth Planning Committee for the WFH 2018 World Congress to be held in Glasgow, I recently participated in a three-part podcast series on VWD, I interned at the Hemophilia Foundation of Michigan, and I’m a social media contributor for Right to Live, a Philippines social media movement working on sharing knowledge in the bleeding disorders community.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Michelle Cecil, and the many other SSMF scholarship recipients, please click here.