We had the opportunity to speak with a few of our community members to share their stories during VHL Awareness Month.
First, we spoke with Jacqueline Zarro.
Jacqueline (Jacq) Zarro is an active member of the VHL Alliance community. Diagnosed at the age of 44, she has several VHL manifestations just like so many others. Having undergone surgeries, radiation, chemotherapy, and other treatments, she’s been through a lot, including losing her mother to kidney cancer.
Recalling a piece of advice her mother gave, which was “if not now, when,” Jacq decidedly chose to volunteer with the VHL Alliance. The path for involvement came in an interesting way. In 2019, Jacq happened to be listening to a radio program that included an interview with the Nobel Prize winning researcher Dr. William Kaelin. The letters V-H-L were mentioned throughout. She stopped in her tracks never having heard VHL discussed publicly.
As Dr. Kaelin’s research focuses on VHL, this work along with that of the researchers who shared this Nobel Prize, highlighted not only the potential to treat VHL, but the possibility of treatments and cures for many types of cancers as well as a path to identify treatments for cardiovascular disease and stroke. This was a monumental realization for Jacq – if VHL research had the potential to positively affect hundreds of millions of patients worldwide, then ongoing advocacy for VHL research funding would therefore be critical.
That can sound like a lofty goal—changing the lives of millions—but that’s the power of the VHL gene. For Jacq, these advances through research were inspiring and motivated her to reach out to the VHL Alliance to find ways to further advance awareness. Ultimately connecting with VHLA Board Member Jennifer Galenkamp, they joined up to pursue government research funding. Together they recently established the VHL Alliance’s Federal Advocacy Team. The cornerstone of the federal advocacy efforts in the U.S. is to participate in meetings with House and Senate staff – early efforts resulted in VHL’s designation as eligible for Congressionally Directed Medical Research Funding for the first time in 2022. For a rare condition to be included for funding was a great accomplishment, however, this is not a one-and-done – every year we need to request this funding – and we need YOUR help!
“At first, federal advocacy can seem daunting, but it’s extremely rewarding, not only for oneself but for many others because of the power of the VHL gene. Advocacy doesn’t have to be a heavy lift. Sometimes we don’t feel well – managing life and a serious illness can be a lot. Specific to federal advocacy for kidney cancer, just 8 hours a year has a significant impact.” While talking with legislators and their staff sounds like a big deal (and it is!), Jacq will be the first to tell you that this is something all of our community members can do.
In fact, Jacq made sure to highlight that there are many ways to contribute to advocacy from small to large – it can be as brief as replying to emails from the VHL Alliance to lend your name or voice to a legislative effort, or joining in the federal advocacy events to share your story through Zoom or in-person meetings with your federal representatives, or even becoming a peer reviewer for government funded research proposals – and there are more ways to engage!
One of the benefits of getting involved in the Alliance is the feeling of community we create for ourselves—the reminder that we are not alone. Jacq is grateful for the friends made through advocacy work. She says, “Advocacy and volunteerism brings connection and friendship.” Advocacy is also empowering as it leads to real outcomes for those with VHL despite the times when it can feel there is little control of the disease.
Overall you could say Jacq is an advocate for advocacy itself. In her words, “Advocacy is using your voice in any way possible to make a difference,” and noted how important each and every person in our community – patients, caregivers, family members, friends, and allies alike – all have a powerful story to share about VHL. She invites you to reach out to the VHL Alliance so that we can all work throughout the year to ensure that our research priorities remain top of mind on the federal level.
Thank you, Jacq for sharing your story and for advocating for us all!
If you, a family member, or friend are interested in getting involved with the Federal Advocacy, please get in touch at info@vhl.org.