VHL Alliance, United States
Katherine Hughes on March 22, 2019 in Health & Sanitation
von Hippel-Lindau (VHL) is a genetic disease that causes benign or cancerous tumors to grow throughout the body, in many locations, including the eye, kidney, brain, and spinal cord. It is a genetic, autosomal dominant disease, which means that even with only one version of a mutated gene, a patient will have the disease and all the associated symptoms. Although there are over 1500 different types of mutations that can cause the disease, the disease itself is rare, and only affects about 1 person per 36,000 throughout the world. The disease’s rarity makes it difficult for patients who have it to find help and a supportive community. That is where The VHL Alliance comes in.
“The VHL Alliance is a 501c3 non-profit organization founded in 1993 by three families with VHL to share experiences, learn from one another, support one another, and help the doctors understand and treat VHL. Today, the VHL Alliance is the preeminent resource and clearing house of patients, caregivers, researchers and the medical community. The VHL Alliance serves families with VHL, people pursuing diagnoses and treatment options or in need of support, and physicians seeking current information about differential diagnosis, screening, and treatment as well as researchers working towards our vision of curing cancer through VHL,” Heidi Leone, The VHL Alliance’s Director of Advancement said.
Since its founding, The VHL Alliance has been an important organization in the VHL community. “The VHL Alliance is a leading funder of VHL research with over $2 million granted to support studies designed to find a cure. The VHL Alliance connects patients with others living with VHL, answers questions for physicians, or field questions to appropriate experts. In other words, VHLA is an educational and support resource through a toll-free hotline, personal conversations including a mentor program, VHL Handbooks, and affiliates and Clinical Care Centers throughout the world,” Leone said.
Although The VHL Alliance has been very successful, there are still areas to improve. Leone described the mission of the organization as dedicated to research, education, and supporting the VHL community, but she hopes to see the mission reach others as well. “I would love to see more awareness about VHL. Especially because of the relationship between the VHL gene and other types of cancer – this means that if we find a cure for VHL, other types of cancer will be also cured.” In the future, Leone believes The VHL Alliance will continue to be a leader in the fight to end VHL and associated cancers. “I would love to put myself out of a job by finding a cure to VHL and other forms of cancer!” she said. “It is only through the generosity of our supporters and volunteers that we can offer so many programs and work towards our vision of curing cancer through VHL.”
Volunteers are essential to The VHL Alliance’s mission. “We could not do all we do without our extensive volunteer team. To find out more about our volunteer opportunities, or to donate much needed funds, please visit vhl.org/give,” said Leone. There are many types of volunteering positions, including ambassadors, liaisons, and fundraisers. You can also find information on how to support The VHL Alliance monetarily, because every little bit counts.