The World Federation of Hemophilia (WFH) is an organization built on the generosity of people who are willing to give in the name of advancing the vision of Treatment for All. Many people share their time and talent with us, while a growing number support us financially. We are excited to introduce two people involved with the WFH who we believe truly capture the spirit of giving: Jim Munn and Genevieve Beauregard. Here are their stories.
Jim Munn works with the Hemophilia and Coagulation Disorders Program at the University of Michigan Health System in Ann Arbor, Michigan, and recently completed two terms as the Co-Chair of the WFH Multidisciplinary Committee. He attended his first WFH meeting in 1998 and became a member of the WFH Nurses Committee at the end of the 2008 Istanbul World Congress. Munn’s motivation to transition into a leadership role is one many in the global bleeding disorders community will be familiar with: he drew inspiration from the work of another volunteer. In his case, that person was Regina Butler, Registered Nurse from the Children’s Hospital of Philadelphia. Already at the point of volunteering with the National Hemophilia Foundation (NHF), Munn succinctly describes his state of mind after hearing Regina’s presentation as, “I was hooked”.
He has many experiences as a volunteer that made strong impressions on him. He recalls traveling with the WFH as a volunteer to attend nursing training workshops in Kenya and Mongolia, and seeing the local families travelling long distances to meet with the nurses so they could practice recording family history information. To his shock, Munn learned that in every family history there was at least one death due to complications related to hemophilia, many coming at a very young age. Yet, within this sadness he also found joy as every patient and family member they met were so grateful for the opportunity to share their stories and know they were contributing to a more certain future for their loved ones. Coming from the United States, where access to clotting factor is a given, he recalls with great emotion the story of the great lengths a Mongolian couple went to get a prophylaxis regimen for their son, including long border crossing trips into China where they would purchase factor with their own money.
Faced with this tremendous uncertainty over access to medication, Munn, in awe related, “Remarkably, they have been able to provide their son with almost uninterrupted weekly prophylaxis for the past two years.”
Munn encourages people to get involved and share with the WFH. He believes that giving back has a strong impact on lives you touch— as well as your own.
Genevieve Beauregard is intimately aware of the difference giving can make in the lives of those living with a bleeding disorder. Beauregard has a decade-plus history of involvement with the Canadian bleeding disorder community. Beginning in 2004, she worked with the Canadian Hemophilia Society’s Quebec chapter, launching a fundraising event for them in 2006 entitled “Dance for Life”. She understood early on that there was a need for on-the-ground help in many developing countries. However, it was a 2013 visit to Nicaragua that really had a deep impact on her. On this trip, Beauregard was the Quebec delegate for a WFH Twinning Program. This program aims to have organizations or hemophilia treatment centers (HTCs) from developed countries work together with developing countries to share information and transfer expertise, experience, skills, and resources. What she witnessed motivated her to action. She recalled thinking that, “In a country a short five-hour flight away from Montreal, there were individuals in dire living conditions with no access to care, limited access to doctors, nurses, and physiotherapists… in short, everything we have in abundance in Canada.”
Upon her return from Nicaragua, she immediately began supporting the WFH with a monthly donation. She believes that every donation makes a difference. Monthly donors provide a stable source of funding for the WFH—one that will give us the financial flexibility to take advantage of new opportunities as they arise.
Beauregard and Munn are part of the growing list of people who have made a difference by choosing to get involved in meaningful ways with the WFH. We are grateful to everybody, past and present, who have chosen to join us as we pursue our shared vision of Treatment for All.