Did you know that VHL (von hippel-lindau) is a genetic disorder where patients develop tumors throughout their body their entire lifetime? They can be anywhere, but primarily focus on the brain;  forcing patients visit oncologists and ophthalmologists. 

My husband’s goddaughter and eldest niece, Macy, is a smart, Joe Burrow-loving, pretty, normal 16 year old girl on the outside, but she is one of the 1 in 36,000 that lives with this disease. While 80% of VHL patients usually inherit the gene from their parents, Macy did not, making her case even more rare. 

Today Macy lives a fulfilling life any other teenage girl would. She plays sports, drives, and shot her first elk this past fall. The medication she is on has improved her quality of life immensely and we are so fortunate for the access, research, and availability we have today. 

Last year was the inaugural walk and Team Macy raised $3,710. We thank everyone who participated, donated, or walked with us in spirit. 

This year our goal is to raise $5,000 for further research into Von hippel lindau disease and be able to make a direct impact to a cause we hold dear to our hearts. 

Thank you for your time and consideration.