Q&A with Bev Heim-Myers Bev Heim-Meyers, CEO and Executive Director of the Huntington Society of Canada As Enroll-HD gets up and running in Canada, one of the leaders in the HD community explains how the study will take shape in such a diverse, sparsely-populated nation. Bev Heim-Myers is CEO and executive director of the Huntington Society of Canada, a non-profit that supports research and family services across the country. Q: How does your organization get involved in research? Our mission is half research and half family services. We invest in biomedical and clinical research. We also advocate for Canadians living with HD, to enhance services for them, increase the reach to rural communities, and increase social work support. HD takes out generations of a family. What we do is advocate so it doesn’t have as much of an impact. We also advocate for genetic fairness. In a nutshell, we increase awareness of HD. Q: What kind of research are you doing? Our focus is to enhance clinical research across Canada, and to set the stage for research going forward. That way, if and when a treatment becomes available, we have the clinical sites ready and we have a mechanism to connect them. We also support research that takes us closer to treatment. We invest about C$1,000,000 a year. It’s almost like seed funding, to take promising hypotheses that could lead to treatments, and bring them to a stage to access bigger money. For example, Simonetta Sipione at the University of Alberta has recently reversed the effects of HD in a mouse, and brought the mouse back to normal physically. That’s exciting research. Q: You also help the Canadian HD clinics share good ideas— how does that work? The clinical sites don’t necessarily talk to each other, and I see that as our responsibility to make that work. One way is through regular teleconferences. Or, for example, when the multidisciplinary HD clinic at North York Hospital in Toronto was moving into a clinical trial, they didn’t know where to go to get information on the next steps. They connected with the clinic in British Columbia to help them. We’re now planning a round table discussion for September to bring HD clinic reps from across Canada to discuss laying the foundation for clinical trials, best practices, and mechanisms to ensure ongoing conversations. I find that in the HD community, we’re pretty good at sharing our best practices. Q: Canada is the second largest nation in the world, but it has only 33 million people. How does that affect what you do? Part of our strategy is to reach out to individuals in rural areas, to be more accessible. For families, accessing care can be difficult. To fly all the way to Toronto from a rural area for medical treatment just doesn’t make sense. Some specialists, like [Toronto neurologist] Mark Guttman, actually travel to the northern areas once or twice a year. In between he can set up some visits via Skype. That model is important. We’ve also funded a project for “telehealth” predictive testing in British Columbia that provides access to experts by phone. It can work in a rural area that might have only a nurse prac- titioner locally. A healthcare professional does the biosample locally, which is then sent in. The results are then discussed over the phone with the expert, but the person being tested also has the healthcare professional there with them—they don’t have to go into a clinic. Not only did we find that people in rural areas were interested in that mechanism, but also people in metropolitan areas who didn’t want to go to into a hospital. I’d like to roll that out across Canada. Q: Is there anything unique about HD in Canada? We have a significant native population, and some groups have a high incidence of HD because of the founder effect. It’s up to us to be accessible to them. I have to understand what will entice, and how to build relationships, so people are not left with inaccurate or flawed information. That’s true not just of our First Nations communities, but other cultures that may not necessarily come to us. We need to figure out how to make that happen. One way is to have a more diverse board. We now have a voting member from our youth group on our board, and an elder from a First Nations community as well. Q: HSC is also focused on helping young people—why is that? Young people can feel incredibly isolated if they don’t have anybody to turn to. It felt important to us for the upcoming generation to have a voice. At our conference in November, we had our first-ever youth day, planned by youth for youth. One young woman said that prior to that meeting the only people she’d ever known with HD were her grandfather, who died of HD, and her father who recently had to be put in a home. She said she was at risk and she’d never been able to talk to anybody about it. It’s incredibly important for people like her to have a place to turn to get the right information. We’re now working on a youth peer mentorship program, so that a few young people who have experienced a lot with this disease have been trained and are available to young people coming into the organization. Youth mentors are also paired with a social worker, to help them mentor somebody else. It’s really a young person coming to a young person, with a profesional to turn to who can answer questions. Q: In Canada, genetic privacy is not protected by law. Does that make it harder to recruit for Enroll-HD? Yes, although Enroll-HD does give participants the option to sign up and not know their results. You don’t need to know your genetic status to participate. You can provide your biomaterial and tell the [site staff] that you don’t want to know. If somebody [such as a potential employer] asks if you’ve had your genome done, you say yes, but the information wasn’t disclosed to you. That way, you are protected. We help people get their insurance in a row before they sign up, we coach them. But it is a barrier. Q: What hopes do you have for Enroll-HD, and what do you tell people about the study? Families and the community can be involved in this. You can be engaged in the future of treatment. At this moment, there may not be something in it for the individual. But if you look down the road there may be. Having a longitudinal study with a robust international cohort is really, really important. If we have a huge registry then, when we do have a treatment, we do know who to go to [to test it]. Signing up means answering a lot of questions, but once you’re in the system you’re in the system. If you move, or you disengage for a while, your information is still there when you re-engage. When you’re faced with a devastating disease, you want to do something. By enrolling in Enroll-HD, you are doing something. This story was originally published in the May 2014 issue of Enroll!