A family affair: meet community leader Madonna McGuire Smith

Madonna McGuire Smith, Executive Director of the Hemophilia Foundation of Oregon (HFO), has been working with the bleeding disorder community for eleven years. She always knew she would devote her life’s work to helping others, but after her son, both daughters and husband received the news they had Von Willebrand Disease, her path became clear. She began working with the Western Pennsylvania Chapter of the National Hemophilia Foundation and when her family moved to Oregon, she assumed her current role. In 2018, their family grew by one more when they adopted a boy from China who has a bleeding disorder.

Madonna McGuire Smith, Executive Director of the Hemophilia Foundation of Oregon (HFO)

“It worked out perfectly to be able to work for a cause that I could be so passionate about.”

Her involvement on the global level began taking shape after attending the 2016 WFH World Congress in Orlando, Florida. It was there she first learned about the WFH Twinning program. She knew immediately that the HFO needed to be part of that endeavour, sensing that her local bleeding disorder community would benefit from the experience. To her delight, HFO was chosen to pair with Ethiopia and they are working with WFH Regional Manager, Africa, Irene Chami to get the most out of the experience.

McGuire Smith believes the power of the program lies in how it moves beyond simple exchange towards a true transfer of knowledge and experience. She is optimistic their work will have an impact in Ethiopia, believing the program’s adherence to the adage, “If you give someone a fish they can eat today but if you teach them how to fish he can eat for life”, lights a path forward for countries struggling to meet the needs of patients.

The Hemophilia Foundation of Oregon is also a steadfast financial supporter of the WFH mission. McGuire Smith witnessed joy and relief in Ethiopia when donated factor from the WFH Humanitarian Aid Program arrived. It showed her the difference support makes for those in need. She also knows from personal experience the importance of access to medication and trained healthcare professionals, as prior to arriving in Oregon her then ten-year old son received less than twenty treatments his whole life. When asked what parting message she would like to leave with readers, McGuire Smith replied, “The WFH is transforming the lives of people with bleeding disorders around the world. Please join us in supporting their mission today”.

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