Marlee Whetten: 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. Marlee Whetten is a 2018 SSMF Scholarship recipient. We asked her a few questions about what it means to receive a SSMF Scholarship.

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

I would say that the biggest challenge facing women like me today is that there is a significant shortfall in the amount of research on women with bleeding disorders versus men. I think this comes from the age-old assumption that only men are affected by bleeding disorders. However, the issue is even larger than this. We know that female hormones such as estrogen and progesterone affect the levels of clotting protein in women—but there is little research to support a different protocol or treatment plan for women with a bleeding disorder who are experiencing menstrual bleeding, are pregnant, or are preparing for childbirth. Consequently, these women are not getting proper treatment for their condition.

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

Mothers and female caretakers of males with bleeding disorders have always been important members of the bleeding disorders community. However, there has traditionally been very little space for women with bleeding disorders in our community. Creating room for new community members starts with creating room for their leaders, and it’s important to provide those individuals with strong learning and leadership building opportunities. I think the Susan Skinner Memorial Fund can help with that by fostering the female leaders of tomorrow.

How do you think attending the 2018 WFH World Congress will impact your involvement with the bleeding disorders community?

Being awarded the SSMF scholarship and attending the 2018 WFH World Congress as a Youth Fellow had a big impact on me. Now, I have access to a network of young leaders worldwide. We can stay in contact to congratulate each other for each of our country’s successes, support each other through the hard times, and share resources and ideas to continually make the world a better place for people with a bleeding disorder.

I’ve always known that I would be involved in the bleeding disorders community for my whole life. And now, because of the Susan Skinner Memorial Scholarship, I can truly make a difference. The group of youth fellows I spent time with at Congress is without a doubt the most meaningful group I’ve had the pleasure to be a part of and I know that we will make a difference.

Can you share with our readers your most memorable moment (or two) from the WFH 2018 World Congress?

As a SSMF recipient and Youth Fellow, I had the opportunity to attend the WFH 2018 Annual Meeting of the General Assembly, and to me, it looked just like the UN. It was very cool to see a space for each national member organization (NMO), with their representatives advocating for people with bleeding disorders in their country. I saw change happening in real time, as new countries were included as members of the WFH. I also observed the voting for changes to the bylaws of WFH and for new board members which I found very interesting. All of this was fascinating and it was a great way to prepare us Youth Fellows to hopefully be active participants in the process before too long.

Another special memory I have from my Congress experience is the Youth Fellow Q&A with WFH Patron, Jan-Willem André de la Porte—which basically turned into a brainstorming session for change. It was amazing to see the commitment of Jan-Willem (and by extension, the WFH) to youth and to people with bleeding disorders around the world. Jan Willem has a lot of experience influencing change so it was amazing to get his advice.

And finally, I have wonderful memories of dancing at the Congress! I love to dance, and because dance is a universal language, it was amazing to be able to express myself along with my new friends all in the same language. I’ll always keep my memories of dancing at the congress close to my heart.

Now that you are back from Glasgow, what project will you be tackling next?

As a staff person for the National Hemophilia Foundation (NHF) in the United States, I’m gearing up for the next stages of the WFH Youth Twinning with our partners in India. We are in the process of planning and organizing four regional youth workshops followed by one national youth workshop. I’ll also be putting the experience I gained from Congress into making the National Youth Program at NHF —the National Youth Leadership Institute (NYLI)—better than ever. I’ve been truly inspired by seeing just how much youth leaders can do and I’m determined to bring that back to my country so that we can all be better advocates, volunteers and community members.

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