"I've come to embrace that I can help families and children growing up today have a good and successful life, by sharing my own perspective growing up with hemophilia."
“I’ve come to embrace that I can help families and children growing up today have a good and successful life, by sharing my own perspective growing up with hemophilia.”
Curt Krouse has come full circle.
Growing up in Eastern Pennsylvania as a child with severe hemophilia B, Curt was always aware of the support services provided by his local chapter of the National Hemophilia Foundation (NHF). Back then, however, Curt’s primary interaction with the group was helping his mother set up the annual fashion show fundraiser she volunteered to organize.
Curt’s personal routine requires him to infuse once or twice per week, depending on his activity level, wear ankle braces and take other measures to help manage the pain of arthritis. All people with bleeding disorders must be vigilant about their activities, and reconsider those that may put them at risk.
He now knows arguably more about the Eastern Pennsylvania Chapter of the NHF than anyone, having served as executive director since early 2014. The role combines his two decades of experience in sports and events marketing with a personal desire to give back to the hemophilia community.
“I’ve come to embrace that I can help families and children growing up today have a good and successful life, by sharing my own perspective growing up with hemophilia. This position has taught me a lot about the community, and a lot about myself. I feel strongly that this is where I am supposed to be.”
A key priority for Curt since taking on the role is extending that sense of belonging to all people with hemophilia and a related bleeding disorder, von Willebrand disease. The Eastern Pennsylvania chapter supports medical research and provides financial assistance, education, family programming and advocacy at the state and federal level to benefit local patients with hemophilia and von Willebrand disease. Their motto speaks of a community united: 41 counties, one chapter.
As Curt considers the medical setbacks and advances that have shaped the hemophilia community throughout his 49 years, he recognizes that the current moment could be a transformational one. He said that recent developments in gene therapy research have given the community a sense of “guarded excitement” about the potential to reshape the care of people whose lives are now ordered around a pattern of receiving infusions of clotting factor to prevent uncontrollable bleeds.