This photo was taken by my grandmother, Nancy Giles, at my first Walk to Defeat ALS® at the Valley Forge Military Academy when I was about seven years old. My memory of this day was being very excited about my face paint and not so excited about leaving the horses to go on the walk. I also remember this event as opening my eyes to the fact that — although her world seemed to revolve around her grandchildren — my grandmother had a dedication to families outside of our own. Far before the fads of ALS hashtags and the ice bucket challenge, she has been at the forefront of the fight for this cause. In 1984, a decade before I was born, Nanni took on Lou Gehrig’s Disease as an advocate for those afflicted and forged a partnership between the Phillies organization and The ALS Association.
For Nanni, supporting people with ALS has not just meant doing record breaking fundraising and personal time and financial donations. More than research and technology, I have witnessed her interest in personally helping people with where they are. It has been just as much about bringing love and opportunities to those with ALS by asking the Phanatic to go to them or bringing them out to the ballgame with their loved ones. A few years ago, I went to a photo-op event Nanni organized for the Phillies players to meet men and women with ALS. Nanni was walking around to introduce everyone and I went with her initially star struck by my favorite athletes. Quickly though, the striking joy on the faces of the families who were meeting the players caught my attention and kept everyone smiling. I was so proud that my grandmother was the one facilitating these moments — and so many more — that everyone there will remember forever.
In addition to creating these positive spaces for people living with ALS, the events that Nanni organizes are centered around community building and interpersonal connection among the volunteers. Under Nanni’s involvement, the The ALS Association Greater Philadelphia Chapter has become the largest and most active chapter in the country. I experienced her first hand expertise at bringing people together from the meals and activities that brought our family around the same table.
Although Nanni has been confined to a wheelchair recently that has not limited the impact on those around her. Her role has merely changed with her impact and breadth of her inspiration only growing. The support she has given me in preparing for the Philadelphia Marathon is a case study for the passion she has brought to “striking out” ALS. She has insisted in outfitting me with the best running shoes and drops off healthy groceries at my house in University City for post- and pre- run snacks. She drives me home after I come for dinner with her and my grandfather on the Main Line so that I can get more sleep instead of waiting for the train. Nanni has sent me cards filled with kind and positive thoughts in her loopy cursive handwriting. Whenever she sees me she notes how nice it is when I wear a sports headband because it pulls my hair away so she can see my beautiful face. And when I asked about running to fight ALS, Nanni put me in touch with the right people.
I am running the Philadelphia Marathon in honor of my grandmother’s limitless and loving philanthropy — all she has done for me and all she has done for those impacted by ALS in our area and beyond.
If you want to learn more about running the 2016 Philadelphia Marathon to fight ALS, email Taylor@alsphiladelphia.org