The goal of the World Federation of Hemophilia (WFH) Susan Skinner Memorial Fund Scholarship is to promote the engagement of women and girls in the global bleeding disorders community by providing opportunities for education, training, and networking. Mamolibeli Mohlaoli—one of this years’ recipients—lives in the mountainous country of Lesotho, surrounded by South Africa, where access to treatment, care and diagnosis is limited. Twenty-two years ago, when she gave birth to her son, she vowed that he would not meet the same fate as the many family members she had already lost to a bleeding disorder. “I was eager to apply [for this scholarship] because I want to learn from other women who have faced these challenges and learn how to think outside the box, and help my community, so that others can see their children live.” Mohlaoli has the distinction of being one of the first scholarship recipients over the age of 30.
I am thrilled to have the opportunity to learn and make connections with women from around the world with hopes of collaborating in the future.
—Shellye Horowitz, 48, United States, Susan Skinner Memorial Fund Scholarship recipient
As part of their scholarship, recipients will be able to attend the WFH World Congress in Montreal this May. There they will be empowered through skill-development workshops, opportunities to interact with leaders in the global community and by deepening their understanding of current best practices in bleeding disorders care.
“When I learnt that my child had hemophilia, I felt alone and had no answers… Knowing that I can exchange with other women going through similar experiences as me [gives me confidence],” said Esra’a Hussein, 28, from Jordan. Hussein is one of many women worldwide struggling to access information about bleeding disorders. “As a woman and a social worker,” she says, “I want to be able to create a space so that people have resources to find the information they need to get help.”
The Susan Skinner Memorial Fund Scholarship commemorates the late Susan Rose Skinner, a teacher, mother, and fierce advocate who was determined to ensure her two sons had access to safe and effective treatment. Her legacy lives on in the 10 most recent recipients of the scholarship that bears her name. The fund directly supports the WFH belief that where you are born should not determine your access to diagnosis, treatment, and care. Yet the disparity remains, especially for women and girls whose struggles often go unheard. “Everyone deserves the chance to live a full life, without fear,” explains Mohlaoli. “I hope to connect with more women to learn how I can improve outreach for people with hemophilia in Lesotho.”