Antonio Almeida, WFH Director of Programs and Education, introduced the third WFH Youth Workshop to be held at a WFH Congress event. As he described the selection process for the WFH Youth Leadership Program and the Susan Skinner Memorial Fund scholarship, he emphasized that the youth are a priority for the WFH. Almeida discussed the WFH Youth Committee as well as the new youth Twinning Program. Resources for pediatric patients were also mentioned, including the brand new In-HemoAction cards.
Deon York, WFH Board Member and Chair and member of the Youth Leadership Advisory Committee, then gave a brief talk on how to survive the conference and recommended various talks to the participants.
The first youth speaker, Marlee Whetten, talked about the twinning program between the U.S. National Hemophilia Foundation (NHF) and the Hemophilia Federation in India (HFI). The HFI youth program has a large representation of young members, and a particularly active fundraising program. Whetten, who manages the youth program of the NHF, said it is important to remember that developed countries do not necessarily have the best ideas; what is right for the U.S.A might not be right for India. Within the Twinning Program, the role of the NHF is to provide expertise and organize information, whereas the role of the HFI is to provide sustainability and information.
Within the Hemophilia Federation, the youth program objectives include holding four regional camps and annual youth group training, identifying future leaders and building their skills, and encouraging youth to become informed, educated and involved.
Rana Mahmoud, a youth group member of the Lebanese Association for Hemophilia, talked about the difficulties of having hemophilia in a country without hemophilia treatment centres. Mahmoud described the various activities that her youth group organizes to educate the public on hemophilia, and to identify and motivate volunteers. Activities include the creation of a theatre group, and a special food market with various street food stalls and restaurants selling traditional and international food.
Carlos Odera, a WFH 2018 Youth Fellow from Kenya, drew on his personal experience to talk about the seriousness of surgical procedures in people with hemophilia. He then described the youth objectives of the Kenya Hemophilia Association (KAH), which include creating awareness of hemophilia and other bleeding disorders among the general public; engaging policy makers and institution administrators; creating awareness among people with hemophilia, their parents and guardians; and engaging in resource mobilization activities to aid the activities of the KAH.
David Braun, another WFH 2018 Youth Fellow, gave the next presentation. Braun was fortunate to receive appropriate treatment that saved his life on two occasions—once when he was three years old and bled profusely after cutting his finger, and then second time when he was 17 years old and was diagnosed with a brain bleed. Through the efforts of the BFH, 18,219 people with hemophilia in Brazil now have access to prophylaxis.
Mathieu Jackson is an Adult Fellowship for Integrating Responsible Mentors (AFFIRM) fellow, Center of Excellence on Partnership with Patients and the Public (CEPPP) patient trainer, and Canadian Hemophilia Society (CHS) Board Member. He initially refused to become part of hemophilia patient associations, but this left him feeling secluded. When he attended university and joined student unions, he realized the impact that societies can have on peoples’ lives. After receiving an educational grant from the Quebec Chapter of the Canadian Hemophilia Society (CHSQ) he decided to get more involved with patient organizations, and now he is employed full-time at University of Montreal Hospital Research Center (CRCHUM).
Nikole Scappe, a Susan Skinner Memorial Fund Scholarship Recipient and member of the WFH Youth Leadership Advisory Committee, spent most of her life in emergency rooms with severe bruising hematomas. Doctors actually thought these were fractured bones, and she was only correctly diagnosed at 13 years of age. This experience motivated her to become active in the bleeding disorders community. She began with local patient advocacy, but now travels all over the U.S.A talking to patients and encouraging them to get treatment. Scappe knows about the inconvenience of living with a bleeding disorder. However, she is also aware that she must face reality and learn from her mistakes, a key message that she passes on to others.
The final presenter, Jack Grehan, said he refuses to be defined by hemophilia even though he has a severe disease. Grehan stated that prophylaxis is a burden as it does not work 100 per cent of the time. He found it particularly inconvenient and stressful to be thinking about treatment while working in his job as a cameraman. Grehan’s motivation for considering gene therapy stemmed from his awareness of the strain placed on a family of having a child with hemophilia. He described his experience on a gene therapy clinical trial, and how his factor VIII levels have risen from 0.1 to 30 percent. Thanks to gene therapy, he can now play golf for several consecutive days. He added that it only takes one person to receive gene therapy to free up huge amounts of factor VIII, which could be reallocated to people with hemophilia in developing countries.