Rare Disease Awareness Day is February 29, 2020
Rare Disease Awareness Day is February 29, 2020, and founder of nonprofit Garage 10, Ashley Gravois, will be selling wristbands to raise awareness and funds. Each bracelet will be sold with details about the organization and statistics on rare disease.
Rare Disease affects Gravois’s family personally. Here, she shares her family’s journey to receiving the correct diagnosis.
“My family was touched by rare disease in 2019, which led me to start Garage 10, a nonprofit that provides financial assistance for travel-related expenses to individuals who have rare disease. After being misdiagnosed by two local physicians, my husband and I sought opinions from an out-of-state physician who concluded with the correct diagnosis which was a rare disease. The first two physicians concluded with a diagnosis which we were told would be terminal, not curable. In our 30s, with three young daughters, we were facing my husband’s mortality. For several weeks, we lived in a world where we did not think we had a future together. We met with our attorney and financial advisor, and we began to prepare and talk about what it would be like for me to raise the girls alone. Had we not sought out an out of state expert opinion, we would have moved forward with the very aggressive treatment local physicians were recommending. When facing a rare disease, it is imperative to find the expert on your disease.
Garage 10 will serve to help with the expenses individuals face when traveling to receive care. The name Garage 10 is derived from where I was when I first had thoughts about creating something like this. I was in Garage 10 at MD Anderson Cancer Center. In 2019, my husband and I traveled to Houston, TX multiple times to seek care and treatment for his rare disease which was an inflammatory myofibroblastic tumor. As we paid for parking, I always thought about those who may be struggling to have to pay for parking every day while at the Cancer Center. My hope is that through this nonprofit, individuals can receive financial aid to assist with those types of expenses.”
Garage 10 provides financial assistance for travel-related expenses to individuals who have rare disease. Because rare diseases are incredibly difficult to diagnose, individuals often seek opinions from multiple providers before receiving the correct diagnosis. Individuals often travel to specialty centers for treatments due to the limited number of physicians knowledgeable about their particular disease.