In August, HDYO welcomed Jenna Heilman as their new Executive Director. In true HD community fashion, Jenna has become an impassioned champion of the mission to connect HD youth (ages 35 and under) and empower them with the information, tools and guidance to be effective self-advocates. She is also focused on facilitating more conversations to engage young people in clinical research and a registry that feeds quality information about juvenile-onset HD to the HD research entities.
Heilman came to HYDO after nearly five years at the helm of Head for the Cure Foundation, which raises funds to support brain tumor research. There, she focused on fundraising and creating support and advocacy programs for patients and caregivers. After seeing the organization through the heart of the pandemic, the time seemed right to turn to other rare disease non-profits, linking up with HDYO.
“There’s just not enough known about Huntington’s disease. The fact that we really focus on helping young people through their journey fits with my personal passion, so I got connected. It’s been a fantastic and whirlwind seven months,” she said.
Heilman talks about the myriad ways HDYO reaches and connects people internationally, from their website that provides articles, videos, links to resources, to their partnerships with social workers and the medical community, camps and in-person events, and support for organizations that are doing work in countries across the globe.
“HDYO is the hub for all of this and for sharing information about how young people are impacted by HD. My role is to hold the umbrella over all these initiatives and programs,” Heilman said.
HDYO is celebrating its 10th year in 2022. Heilman relates how founder Matt Ellison, whose father had HD, had tried unsuccessfully to find resources and support as a young person and was inspired to start an organization that filled these yawning gaps. He connected with BJ Viau (who later served as HDYO chairman) and the organization was born.
“No one was talking about Huntington’s disease impacts on young people. It was just not even a focus. HDYO addresses the fact that young people and children need to understand what’s going on, and why is my mom or my dad changing so much, and why are they acting like a different person? Also, we educate them on empowering themselves to have the right information to answer questions about the genetic testing process, genetic counseling and other important decisions. How can I help myself? What is my experience as a caregiver, and how can I be the best I can be for my loved one and also protect my own right to live my life?”
Heilman and the HDYO board met in late March to develop their strategic plan for the post-pandemic/endemic future. One of the new components is building up their global juvenile onset HD registry, JOIN-HD, just launched earlier this year.
“JOIN-HD is a global registry where caregivers and patients can self-enroll and let us know what their experience has been like with juvenile onset HD,” Heilman says. “We’re trying to connect this community, find out where everybody is located, understand what those unmet needs are and then use that information, through our research committee, to communicate it to pharmaceutical companies for future drug development and to support clinical trials. That really has never been done. This would be the first global registry focusing on juvenile onset HD.”
Breaking Down Barriers, another program recently launched, aims to defuse the stigma around HD, and particularly around clinical research participation. This program was introduced with two videos, available on social media, on drug development and clinical trials, following young people as they participate in Enroll-HD. Future plans include a behind-the-scenes tour of a research lab, tools to access HD research, experiences of a young caregiver, and a series on how to speak to children about HD.
“We find that there are a lot of misconceptions or just kind of a curtain over information about the back end of clinical trial development,” she said. HDYO is partnering with HDSA on a mentorship program that trains young people to become mentors and pairs them up with mentees in their community for a peer-to-peer support system.
HDYO also provides age-appropriate educational resources online that include the choices around genetic testing, family planning, and what it’s like to be in a family impacted by HD. “We want to do anything we can to help empower young people to make those decisions that are best for them. We’re going to be there to provide education and perspective,” she said.
When asked about the group’s immediate challenges, Heilman points to the transition from the “pandemic” years of virtual communications to the “endemic” years ahead. She says HDYO is at an inflection point at this 10-year mark to really establish a strong identity and define themselves in the post-pandemic future. “The last two years have been about just trying to make it through the pandemic and adjusting to virtual platform, and now we have the luxury of some time to really sit down to look at what worked out well. What can we bring back from before? What do the next couple of years look like? While virtual conferences have served to bring more people together internationally, in rare diseases, nothing replaces the in-person contact, and plans are underway for how to bridge that gap.”
She points to the board and ambassadors as providing the broad perspective of how HDYO can expand efforts to fulfill unmet needs of other organizations and vice versa, and finding areas for pooling resources and collaborating. “Where is there room for collaboration? Where can we add new programs that are meeting something that’s just not getting done right now? So that’s really what we’ve looked at in our strategy meeting,” she said.
Heilman is joined by two other new staff members this past year: Rebecca Mason, Registry Coordinator, and Jenna Shea, who facilitates the mentorship program along with the HDSA. “The team of volunteer committee members and international ambassadors has also grown with the addition of a world-renowned scientific oversight committee for the JOIN-HD registry,” she said. “We also have a phenomenal research committee that helps provide insight to JOIN-HD and the mentorship program while also presenting at international conferences. Moving forward, we plan to work with IRBs so that our research can be published.”
Heilman says HDYO’s work all comes down to simple principles and an overarching advocacy goal. “I like to say we are teaching young people both ‘Big A’ and ‘little a’ advocacy. ‘Big A’ is about advocating for the whole community, and ‘little a’ is about advocating for themselves,” Heilman said.