Two brain hemorrhages at age 22 changed my life
I'm one of 140,000 Americans with the rare disease CCM, and I'm fighting for a cure
I'm one of 140,000 Americans with the rare disease CCM, and I'm fighting for a cure
Your support is crucial to funding a cure for cavernous malformation (CCM)
Hello, my name is Taylor VanZant, daughter of Johnny VanZant, lead singer of the band Lynyrd Skynyrd. I am currently 23 years of age. In the early morning hours of September 24th, 2024, I awoke with my right side completely numb and rushed to the nearest emergency room. After numerous tests and many painstaking hours, I was diagnosed with a rare disease known as a cerebral cavernous malformation (CCM), also called a cavernoma, in the left thalamus of my brain.
Cavernous malformations are noncancerous masses of malformed blood vessels that can leak blood, typically in the brain, brainstem, or spinal cord. They can be inherited through the genetic form, or they can be sporadic. It is thought that about one in every 500 individuals has a cavernous malformation, and most go a lifetime without any complications or ever being diagnosed. However, an estimated 140,000 children and adults in the United States are symptomatic, facing a range of life-changing and life-threatening issues like seizures, stroke, and hemorrhaging. The severity of symptoms depends on the location and size of the cavernous malformation and can vary greatly.
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The only treatment option is surgery, which is not possible for everyone. Even then, the cavernous malformation has the potential to grow back or not be removed entirely. The location of my cavernous malformation is deep in my brain, and it is pushing on my corticospinal tract, which controls voluntary movements. Since mine has already bled twice, the risk of another brain hemorrhage has increased significantly. Currently, no medication can cure a CCM; there are medications only to manage symptoms. Living with this disease can be incredibly debilitating and can feel like living with a ticking time bomb inside your body. The constant worry of another brain bleed, and possible neurological deficits that can follow, is indescribable. I worry not only for my future but also for my loved ones. This disease has completely changed my life and the lives of those around me.
Finding others with this disease is essential for individuals with cavernous malformations, as it can provide community, support, strength, guidance, and hope. Alliance to Cure Cavernous Malformation is a 501(c)3 nonprofit organization started in 2002 by a mother whose baby daughter was diagnosed with CCM. The Alliance's mission is to drive a cure and improve lives for all with CCM. As part of their research work, they have begun a CureDriver™ Lab to test dozens of medications that could potentially treat cavernous malformations. If these drugs are proven effective, they can become candidates for testing in clinical trials. Depending on the number of candidates tested, the price can range annually from $200,000 to $300,000. Without the help of donors, the CureDriver™ Lab is limited in the number of drugs it can test. The Alliance also awards funds to researchers with promising CCM treatment options.
Your support is crucial and would directly contribute to finding a cure and improving the lives of those affected by CCM. Thank you for your time and for participating in this vital cause.
Sincerely,
Taylor VanZant
Additional ways to donate
By check, mail your check to: Alliance to Cure Cavernous Malformation, 977 Seminole Trail Box 367, Charlottesville VA 22901
By donor advised fund (DAF), direct funds to EIN 02-0600697; Angioma Alliance d/b/a Alliance to Cure Cavernous Malformation.