Why I Walk to Defeat ALS

My family has been participating in the Walk to Defeat ALS since 2013. My aunt formed our team to honor my grandmother, Adeline, who was diagnosed with ALS at just 51 years old. Adeline was a beautiful woman with a heart full of love. As a mother of nine, her greatest joy came from gathering her family around the table, filling it with food, laughter, and love. Most of all, she loved seeing everyone happy and together. It was truly a blessing to call her my grandmother.

ALS runs deep in our family. My grandmother lost four of her siblings to this devastating disease, and a couple of years ago, we lost her nephew. This cruel legacy continues—because in December 2021, my father was diagnosed with ALS.

The urgency to fight this disease was always in my heart, but my father’s diagnosis brought it painfully close. I spent years helping care for my grandmother and witnessing the toll ALS takes. Knowing my dad would face that same path was unbearable.

After my father’s diagnosis, he underwent genetic testing. That was when we first learned about familial ALS. I immediately sought genetic counseling with Dr. Simmons at Penn State Health and began my own testing. After a long, emotional wait, my results came back positive. I carry the same rare gene mutation linked to ALS. Dr. Simmons told me only a couple dozen families worldwide are known to carry this gene. In that moment, I knew I couldn’t stay on the sidelines—I had to act now my dad, my daughter, my son, my future grandchildren, my brother, my aunts, my. uncles and my cousins.

Since then, I’ve joined several studies with the National Institutes of Health, Columbia University, the University of Miami, and Penn State Hershey contributing to research aimed at finding a cure. 

Along the way, we’ve discovered extended family across the country who share our genetic mutation. Together, we’ve joined forces with NextGen to fight this horrible disease.

Our team’s slogan for the Ocean City Walk to Defeat ALS is:

“In this family, no one fights alone.”

This isn’t just about our O’Sullivan family—it’s about all families impacted by ALS, standing shoulder to shoulder, refusing to let this disease define our future.

We walk for my grandmother, We walk for my father.  We walk for each other.

We walk to defeat ALS.