Since we last shared an advocacy update, we've seen exactly what can happen when the VHL community raises its voice. VHL research opportunities expanded within the Department of Defense's Congressionally Directed Medical Research Program (CDMRP) through the Peer Reviewed Medical Research Program (PRMRP), that through our advocacy work, Von Hippel Lindau is listed as a program area for which researchers can submit for funding. In FY25, a record nine VHL research applications were submitted for federal funding. Three ultimately received awards totaling more than $7 million.
Those dollars represent more than an advocacy win. They represent researchers getting the resources to ask new questions, pursue promising ideas and move us closer to better options for people living with VHL. And they are a powerful reminder of why continuing to tell our stories matters.
How a Story Becomes Change
When Congress makes decisions about research funding, the
conversation can easily become about numbers, programs, and budgets.
Our stories remind decision-makers what those numbers actually represent.
Research funding can mean another scientist has the opportunity to study VHL, a promising idea gets explored, or researchers learn something new about VHL and the cancers connected to it. Ultimately, it can mean more hope and better options for patients and families.
You don’t need to know every detail about federal research policy. The VHL Alliance can help with that part!
You bring the part no one else can: what VHL has meant in your life.
There Isn’t Just One Way to Advocate
Advocacy doesn’t have to mean traveling to Washington, D.C.
There are many ways to be part of VHL advocacy, and you can get involved in whatever way feels right for you.
Whether you have a few minutes or are ready to speak directly with lawmakers, your voice can help us continue building support for VHL research.
Raise your hand. Sign up to let us know you’re interested in supporting VHL advocacy. This helps us build a network of advocates across the country and keep you informed about opportunities to take action.
Share your story.
Your experience with VHL can help bring our advocacy to life. We’d love to capture your story so we can incorporate the voices of patients and families into advocacy materials and help decision-makers understand the real people behind the policies we’re working to advance.
Help us build congressional support.
Help us secure additional signatures and support from senators across the country. The more congressional champions we have standing with the VHL community, the stronger our collective voice becomes.
Meet with your legislators.
Ready to take the next step? Volunteer to share your story in a virtual meeting with your legislators and their staff. You’ll be joined by another VHL Alliance representative who can help lead the policy conversation, you simply bring your experience and your voice.
However you choose to participate, you don’t have to be a policy expert and you don’t have to do it alone. Every action helps us build a stronger voice for the VHL community!
Left: VHL Advocate works alongside KidneyCan to ask for strong NIH Funding and Kidney Cancer Funding, source: KidneyCan
Right: Executive Director, Janet Thompson, advocates on behalf of VHL patients who experience Pancreatic Neuroendocrine Tumors (PNETS) or Kidney Cancer for Rare Cancer Day (September 23) in partnership with the NORD Rare Cancer Coalition. Source: NORD RCC
Your Story Is Enough
Talking with a congressional office for the first time can feel intimidating. What if you don’t know enough about policy? What if someone asks a question you can’t answer?
You don’t have to have every answer. That’s why we advocate together.
The VHL Alliance and our advocacy volunteers can provide the information, talking points, and resources. What we can’t provide is your experience.
You know what it’s like to wait for scan results. You know what another surgery or treatment can mean for a family. And you know what you hope the future of VHL looks like.
When you share that experience, you give decision-makers something a fact sheet alone never could: a reason to understand why this matters.
Add Your Voice
So much progress in VHL has happened because researchers, clinicians, families, patients, and loved ones believed things could be better and were willing to speak up.
We still need those voices.
You don’t have to be an expert. You don’t have to know exactly what to say. And you don’t have to do it alone.
You just have to be willing to share your story.
If you’ve ever wondered whether you could be an advocate for the VHL community, we’d love to have you join us!
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