My VHLA Walk Fundraising Page
Kimberley Krueger-Aguayo
Kimberley Krueger-Aguayo
Voices of VHL is an advocacy community created by me, Kimberley Krueger-Aguayo, after my family was diagnosed with Von Hippel-Lindau disease in 2024. What started as a way to share our journey quickly grew into a global community of VHL warriors, patients, and caretakers spanning 11 countries. Our mission is simple — no one fighting VHL should ever feel alone. This May 16th, my two oldest children and I are walking in the VHL Alliance Awareness Walk on behalf of Voices of VHL and our entire community. Every single dollar raised goes directly to the VHL Alliance — the world's leading VHL patient advocacy organization and the largest private funder of VHL research. We are not raising money for ourselves. We are raising money for every warrior, every family, and every future patient who deserves better treatments and one day — a cure. 💙
Our Family's Story My name is Kimberley Krueger-Aguayo, and I walk with my two oldest children — ages 16 and 12 — as **Voices of VHL**.
Just last year, our lives changed in a way we never could have anticipated. After I underwent a lumpectomy for atypical ductal hyperplasia, my doctors recommended genetic testing. The results came back positive for Von Hippel-Lindau (VHL) disease — a rare genetic condition I had never heard of. I immediately had my children tested. They came back positive too.
In the span of a few weeks, our family of three went from navigating one health challenge to facing an entirely new reality together. What Is VHL Disease? Von Hippel-Lindau (VHL) disease is a rare hereditary condition caused by a mutation in the VHL gene. It causes benign and malignant tumors and cysts to grow in multiple parts of the body, including:
- 🧠 The brain and spinal cord (hemangioblastomas) - 👁️ The eyes(retinal hemangioblastomas, which can cause vision loss) - 👂 The ears (endolymphatic sac tumors, which can cause hearing loss) - 🫀 The abdomen (tumors of the kidneys, adrenal glands, and pancreas) VHL affects approximately 1 in 36,000 people worldwide. Because it is genetic, it can be passed from parent to child — which is exactly what happened in our family. There is currently no cure, but with vigilant monitoring and early intervention, many complications can be managed.
Our Life Now
Since our diagnosis, our family has embraced a new normal. Every six months, the three of us undergo comprehensive screenings — MRIs of the brain, spine, and abdomen, eye exams, hearing checks, and more — to monitor for any new or changing tumors. It is a lot to take on, but early detection is everything with VHL. Catching things early gives us the best chance at staying ahead of this disease. We are incredibly grateful that my lumpectomy led us to genetic testing. Without it, we may not have known about our VHL for years — and by then, tumors could have grown silently without us knowing. We are not defined by VHL. But we are shaped by it — and we choose to use our experience to raise awareness and funding for the research that could one day change the lives of everyone in the VHL community.
Why We Walk
On **May 16, 2026**, my kids and I will lace up our shoes and walk as **Voices of VHL** — because we believe our story deserves to be heard, and because no family should face this diagnosis without support, resources, and hope. Every dollar raised through the **VHL Alliance Walk** goes directly toward: - Funding critical VHL research - Supporting families newly diagnosed with VHL - Expanding the VHL Clinical Care Network - Advocating for federal research dollars We are asking you to walk with us — not on the trail, but in spirit — by making a donation to our team. No amount is too small. Every contribution brings us one step closer to better treatments, and one day, a cure. Please donate today and help our family's voices be heard.
💙 *The VHL Alliance is the world's leading VHL patient advocacy organization and the largest private funder of VHL research. To learn more, visit www.vhl.org.* *Questions about the walk? Contact the VHL Alliance at michelle.dicken@vhl.org
Our Family's Story My name is Kimberley Krueger-Aguayo, and I walk with my two oldest children — ages 16 and 12 — as **Voices of VHL**.
Just last year, our lives changed in a way we never could have anticipated. After I underwent a lumpectomy for atypical ductal hyperplasia, my doctors recommended genetic testing. The results came back positive for Von Hippel-Lindau (VHL) disease — a rare genetic condition I had never heard of. I immediately had my children tested. They came back positive too.
In the span of a few weeks, our family of three went from navigating one health challenge to facing an entirely new reality together. What Is VHL Disease? Von Hippel-Lindau (VHL) disease is a rare hereditary condition caused by a mutation in the VHL gene. It causes benign and malignant tumors and cysts to grow in multiple parts of the body, including:
- 🧠 The brain and spinal cord (hemangioblastomas) - 👁️ The eyes(retinal hemangioblastomas, which can cause vision loss) - 👂 The ears (endolymphatic sac tumors, which can cause hearing loss) - 🫀 The abdomen (tumors of the kidneys, adrenal glands, and pancreas) VHL affects approximately 1 in 36,000 people worldwide. Because it is genetic, it can be passed from parent to child — which is exactly what happened in our family. There is currently no cure, but with vigilant monitoring and early intervention, many complications can be managed.
Our Life Now
Since our diagnosis, our family has embraced a new normal. Every six months, the three of us undergo comprehensive screenings — MRIs of the brain, spine, and abdomen, eye exams, hearing checks, and more — to monitor for any new or changing tumors. It is a lot to take on, but early detection is everything with VHL. Catching things early gives us the best chance at staying ahead of this disease. We are incredibly grateful that my lumpectomy led us to genetic testing. Without it, we may not have known about our VHL for years — and by then, tumors could have grown silently without us knowing. We are not defined by VHL. But we are shaped by it — and we choose to use our experience to raise awareness and funding for the research that could one day change the lives of everyone in the VHL community.
Why We Walk
On **May 16, 2026**, my kids and I will lace up our shoes and walk as **Voices of VHL** — because we believe our story deserves to be heard, and because no family should face this diagnosis without support, resources, and hope. Every dollar raised through the **VHL Alliance Walk** goes directly toward: - Funding critical VHL research - Supporting families newly diagnosed with VHL - Expanding the VHL Clinical Care Network - Advocating for federal research dollars We are asking you to walk with us — not on the trail, but in spirit — by making a donation to our team. No amount is too small. Every contribution brings us one step closer to better treatments, and one day, a cure. Please donate today and help our family's voices be heard.
💙 *The VHL Alliance is the world's leading VHL patient advocacy organization and the largest private funder of VHL research. To learn more, visit www.vhl.org.* *Questions about the walk? Contact the VHL Alliance at michelle.dicken@vhl.org
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