Since 2007, the World Federation of Hemophilia (WFH) has awarded the WFH Susan Skinner Memorial Fund Scholarship to young women with bleeding disorders. The winners of the 2013 and 2014 scholarships are Leslie Ferber, 27, of Oakland, California, and Salma Kiran, 25, of Layyah, Pakistan, respectively. Recipients of the scholarship attend WFH educational and training events, such as the WFH World Congress, and regional or global training workshops.
Scholarship winners’ backgrounds
Ferber immigrated with her family to California from China when she was 9 years old. “One of my earliest memories is of noticing how my father was different than others. He’s rather immobile due to lack of treatment most of his life,” she says. “But that never stops him. He was the reason I got involved in the bleeding disorders community.”
Ferber’s participation in the community started years ago when she worked as a camp counselor at Camp Hemotion in Oakland, California, with children who have bleeding disorders. She then served as a Young Adult Delegate for the National Hemophilia Foundation (NHF), teaching teens about bleeding disorders and motivating them to join youth programs. During her time with NHF, Ferber also worked as a grassroots lobbyist in Washington, DC, and coordinated various national campaigns to promote advocacy.
“Our family was very fortunate to be able to emigrate and receive proper healthcare,” says Ferber. “However, this is an exception and not the norm. Our community has to band together and pursue treatment for all.”
Ferber also advocates for her own health needs. “It was easy to convince my doctor of my carrier status, but it was hard to get my bleeding disorder symptoms properly diagnosed,” she says. “Many doctors don’t understand that a carrier can exhibit symptoms. The community should reach out to doctors, particularly OB/GYNs.”
The scholarship has given Ferber access to people who have helped influence and inspire her, many of whom she met in May in Melbourne, Australia, at the WFH 2014 World Congress, “I was able to learn from and network with the best people in the bleeding disorders community, while being able to brainstorm new advocacy ideas with like-minded individuals,” she says.
Ferber is the fourth American to win the scholarship since it was established in 2007. Previous winners were Julia McDougal from Utah; Mallory O’Connor from Washington, DC; and Alexandra Johnson from Michigan.
Kiran, who has von Willebrand disease (VWD), is committed to improving access to VWD information and treatment, with a particular focus on women. “I think education, advocacy and provision of injections will certainly make excellent changes,” Kiran says. Her goal is to bring that education to those who need it most. “I am going to organize a workshop for girls with VWD. I will tell them what I got from youth training. I will try to improve the lives of patients with VWD.”
Kiran also recognizes the important role of youth as future volunteers. “It is important to effectively deal with challenges empowering youth to add vigor to our chapter and the Pakistan Hemophilia Society, given the fact that we have inadequate replacement therapy, inadequate treatment structure, communication problems and limited community involvement in hemophilia.”
The Susan Skinner Memorial Fund endowment was established in 2007 by WFH USA to support the training, education and leadership development of young women with bleeding disorders. Scholarship recipients ages 18 to 30 years, from the US and abroad, demonstrate outstanding leadership to improve the care of women with bleeding disorders in their country and have the potential to become future leaders in the bleeding disorders community. The fund commemorates the late Susan Skinner, an American woman determined to ensure the availability of safe and effective treatment for her two sons.