By: Chandra Clark, Executive Director, VHL Alliance 

The VHL Alliance (VHLA) is a nonprofit organization whose mission is to improve the quality of life and health outcomes for VHL patients, families, and caregivers with inclusive community building, connections to excellent education, and treatment options, as well as advancements in medical research. VHLA is the pre-eminent resource for patients, families, caregivers, researchers, and the medical community. The VHL Alliance’s vision is Curing Cancer through VHL research. 

What is VHL? Von Hippel-Lindau Disease (VHL) is an inherited disease that can sometimes occur randomly (de novo), caused by a mutation in the VHL gene, a tumor suppressor gene that is in every cell of our bodies. VHL disease causes cells to lose their ability to properly identify oxygenation levels, causing them to behave as if they are starved of oxygen. The body’s response is to create new, abnormally formed blood vessels that turn into tumors in different organs. The eyes, brain, spine, pancreas, adrenal glands, and kidneys are most affected. While most tumors are benign (not cancerous), they may grow and cause serious side effects. VHL can also cause malignant (cancerous) tumors in the kidneys or pancreas. 

The month of May is highlighted as VHL Awareness Month, and VHLA has a variety of activities planned to help raise awareness. 

May 1 – MyVHL Day – On this day, people affected by VHL will (virtually) unite for a common cause: participating in MyVHL, a patient natural history study that will provide VHL researchers with information to learn more about the disease and its impact. You can participate by logging into MyVHL (vhl.org/MyVHL) and filling out your annual surveys on, or by, May 1. Then, join us that evening at 7 p.m. ET via Zoom for an hour-long celebration filled with music and fun! It will be an uplifting day that you won’t want to miss! Please register in advance to participate at: vhl.org/MyVHLDay  

May 8 – Mom’s Day Run – Sign up to participate in the 10th Annual Mom’s Day Run! This event is held in person in Ventura Beach, CA, but you can sign up to Run, Walk, Skip, or Stroll wherever you are on Mother’s Day, and raise money and awareness for VHL. Click here to sign up. 

May 15 – Lunar Challenge – 48 hours of activities to raise money and awareness for VHL in honor of friend, advocate, and inspiration Shawn Mastrantonio. This year’s event will include fun challenges, drawings, and other ways to interact! All proceeds benefit VHLA. 

May 18 – Bridge Lightings – Turn things blue! Bridges, canals, porch lights, etc. Contact your local government buildings to see if they will turn the lights blue for VHL Awareness Month! 

May 18 – 2022 VHL Warrior Call – The 2022 Warrior Call is a virtual gathering for all to hear and explore the world of VHL research while celebrating the hope brought about by a breakthrough pharmaceutical treatment for patients with VHL. This dynamic and interactive event will allow you the opportunity to hear some of the transformative things happening in the world of VHL research. To learn more about this event or to purchase tickets, please visit: vhl.org/warriorcall 

May 27-29 – Bloomia Tulip Drop – Originally launched in 2020, Bloomia donated over 350,000 tulips to the community to create happiness at an unsettling time as the pandemic swept the country. The amount of positive feedback and resounding success led to another Tulip Drop in which this time, money would be raised for a local nonprofit. This year, the VHL Alliance is the recipient of this initiative. You can preorder tulips on the Tulip Drop website. 

PLAN YOUR OWN EVENT! – Join other volunteers as they plan their own events to support VHLA. There are some great ideas, including step-by-step suggestions on our Volunteer Resource page. Please share your plans with us by filling out a Third Party Event form so we can understand your event and assist you!

To learn more about other May Awareness events visit: vhl.org/awareness/  

The VHL Alliance is a member of the National Health Council. For more information on membership, email [email protected].