WFH NETWORK

My WFH Congress Experience

Recipient of the 2009 Susan Skinner Memorial Fund Scholarship

Thomas Skinner, Mallory O'Connor

I am Mallory O’Connor, a young American woman who is a carrier of hemophilia. I was awarded the Susan Skinner Memorial Fund scholarship in 2009. Attending the XXIX World Hemophilia Congress was a once in a lifetime opportunity, and by far the most amazing experience I have had as a part of the hemophilia community.

Being able to meet with others and network with those who share my passion for people affected by bleeding disorders made for a truly phenomenal spirit at the event. The sessions helped me to shape broader global views, as I saw other countries’ experiences firsthand. Furthermore, it was interesting to gain so many different perspectives on programming and funding, treatment and insurance coverage for hemophilia, and especially carrier and youth involvement in the community.

One such opportunity I had to gain more insight into this involvement was a dinner I attended with 23 other young adults, representing 14 different countries. It was excellent to see so many other young people who want to make a difference in the bleeding disorders community. Being a recipient of the Susan Skinner Memorial Fund Scholarship helped me to understand how important it is for carriers and women with bleeding disorders to be involved, and what a difference we can make. This new level of understanding drives me towards finding more ways for young women who are carriers to become involved, and to encourage those who know they are carriers to take action.

My experience at the Congress was further enhanced by being able to meet Mark Skinner, WFH President, and his father, Tom Skinner. It was so great to learn from both of their experiences, specifically about Tom’s wife, Susan, and her dedication to the bleeding disorders community, which made me feel even more greatly honored to be a recipient of the Susan Skinner Memorial Fund Scholarship. Further, it was interesting to hear the perspectives, visions, and dedication that Mark has demonstrated to this community, and I truly look to him as a role model for my future.

I never could have imagined the life-changing experiences I would encounter at this Congress and how they will forever shape my future in the bleeding disorders community. I now know the challenges faced and the triumphs that have been made in other countries and that the passion I have for this community is present worldwide. Also, I now know that I am a carrier with a life-long commitment to helping people with bleeding disorders and inspiring that same passion and commitment in others.


By Mallory O’Connor
December 2010