A tribute to Mark W. Skinner

Since he was first elected as the World Federation of Hemophilia (WFH) president in 2004, Mark W. Skinner has become the face of the WFH. His term as president ends in July 2012, so it is fitting to highlight some of his accomplishments.

Mark’s focus, first and foremost, is on the patient and he works tirelessly to make things better for people with bleeding disorders. As a child growing up in the 1960s, Mark experienced the pain and despair of bleeds with little treatment, and it became his mis-sion to make life better for others. “No one should have to suffer the pain I endured as a child,” he said. Over the last eight years Mark has travelled to every region of the world, visiting 58 countries, and has met with thousands of people with bleeding disorders, bringing the message of hope for a better life.

One of Mark’s first major initiatives as president was to undertake a strategic planning exercise in 2005, which led to the identification of a new vision for the WFH: Treatment for All. One day, treatment will be available for all those with inherited bleeding disorders, regardless of where they live. Treatment for All means more than just treatment products; it means proper diagnosis, management, and care by a multidisciplinary team of trained specialists. It means safe, effective treatment products are available for all people with inherited bleeding disorders. It means expanding services beyond hemophilia to those with von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.

Mark’s personal experiences with the AIDS pandemic in the 1980s raised his awareness of the need for patient involvement in government oversight and the role of the patient advocate to protect oneself. This continued at the WFH, as he played a key role in promoting the need for patient participation on national hemophilia committees and in introducing, together with Gordon Clarke, a new advocacy training initiative to help WFH national member organizations make the case for better care to governments.

Mark’s extensive fundraising experience helped strengthen the WFH’s financial position and diversify its funding. During Mark’s two terms as president, six new corporate partners have been added and, excluding Congress revenue and Humanitarian Aid donations, the WFH’s annual revenues have nearly doubled from Can$2.5 million in 2004 to Can$4.9 million projected for 2012. He also set up the Susan Skinner Memorial Fund, in memory of his mother who was a symptomatic carrier, to support the education and training of young women with bleeding disorders.

Mark’s hope for Treatment for All extended not only to treatment, but to the hope for a cure. He has also played a lead role in de-veloping the WFH’s new research program, to be launched at the WFH 2012 Congress in July.

During Mark’s tenure, the WFH has become a powerful voice for the bleeding disorders community, and he has prepared the WFH to embark on an exciting new phase as we prepare to commence the WFH’s 50th anniversary activities. Like the WFH’s founder, Frank Schnabel, Mark had a dream to “alleviate the pain and plight of the world’s haemophiliacs,” and through his work, he has succeeded. On behalf of the global bleeding disorders community, we say thank you.

Hemophilia World, April 2012