The Most Interesting Thing About Me

Hint: It’s not that I have von Willebrand Disease

Mary Ann Massolio

When Mary Ann Massolio was in high school, her then-undiagnosed bleeding disorder forced her off the swim team. Suddenly, a sports scholarship that was in reach fell out of reach. Still undiagnosed, she switched to running and completed 15 marathons.

Do not let anyone tell you that you can’t. Never give up,” she remembers her father telling her.

Massolio was in her 30s before her own sleuthing uncovered that she had von Willebrand disease, a bleeding disorder that often goes undiagnosed in women. 

Decades later, her drive and determination continue to shine through in the work she does. Massolio, a hematology/oncology social worker, founded the 1Voice Foundation, a Florida nonprofit that supports the needs of pediatric cancer patients and their families. Launched in 2009, the organization she leads is hard at work to build a physical school, where kids in cancer treatment can continue going to classes.

Massolio’s organization aims to address “the cause, the cure, and the care.” That means pushing for legislation that will benefit families living with pediatric cancer; research to improve cancer treatment; and direct care of the families themselves. That’s where the school – 1Voice Academy – comes in. Children in cancer treatment miss a lot of school and that means they miss out on the normalcy and friendships that going to school sustains.

Massolio knows the world of pediatric cancer from both professional and personal experience. In 1997, she was a hospital social worker assisting families whose children had hemophilia, sickle cell disease and cancer, when her own 9-year-old son, Jay, was diagnosed with non-Hodgkin’s lymphoma. He died six months later and Massolio says her career is “in memory of my son.”

What’s most interesting about Massolio? Read on to find out how she answered that question.

I’m proudest of: My children: My daughter and my career in memory of my son.

 

Goal I’m striving toward now: Purchasing a building for a permanent home for the school I am opening.

 

Best advice anyone ever gave me: Do not let anyone tell you that you can’t.  Never give up. (from my dad).

 

Something I learned the hard way: What pediatric cancer families go through. Going from the staff lounge at the hospital to the parents’ lounge.

 

My idea of the perfect day: Everyone is where they want to be.

 

Favorite musician: Josh Groban

 

Favorite movie: Steel Magnolias

 

My most prized possession: I don’t have one.

 

Something most people don’t know/understand about kids and families facing pediatric cancer: How pediatric cancer affects the whole family, not just the child.

Mary Ann Massolio in Washington, D.C.

Mary Ann Massolio holds a picture of her late son, Jay, while visiting Washington as part of her work with the 1Voice Foundation, a Florida nonprofit she founded that supports the needs of pediatric cancer patients and their families.

Something most people don’t know/understand about my illness: They think I bleed fast and uncontrollably.

Most common question people ask about my illness: How did you “get it?"

My advice to anyone who’s living with my illness: Get involved with the bleeding disorder community and surround yourself with those who share your journey. You are not alone.

The most interesting thing about me is: My ability to talk to anyone about anything!