High school senior Leila Sulentic and her family have been battling ALS for as long as she can remember.
"My first experience was when I was around 5 years old, and my grandmother was diagnosed with ALS,” Leila shared. “After a long and hard struggle, she passed away in April of 2010. Ever since then, ALS has been at the forefront of my family’s life.”
“In 2015, my Aunt Sue was diagnosed with frontotemporal dementia, a fatal disease caused by the same gene as ALS, affecting the brain and memory rather than the body. She was the mother of six kids, preschool teacher of many years, avid baker, devoted Catholic, and an extraordinarily kind and loving person, it has been difficult to watch her memory and personality slip away.”
Lelia’s family learned that these cases were familial ALS (FALS), which occurs in around 10% of those who are diagnosed. FALS can present at different ages and progress differently in various family members, due to a genetic mutation which can be passed down from generation to generation. This means that a parent who has this gene has a 50% chance of passing that mutation to his or her children. Both men and women are equally likely to inherit the genetic mutation. A child born to someone with FALS has a 50% chance of inheriting the FALS gene mutation. Typically, although not always, there will be someone in each generation with ALS and/or dementia.
"My family took another hit from ALS when my Uncle Steve was diagnosed in early 2017,” shared Leila. “Steve was an inspirational man, someone who valued family, God, and faith above all else. He followed happiness his entire life, becoming a firefighter in his thirties and then a high school English teacher in his forties, despite having a law degree from Harvard. He also completed an IronMan, owned a gym, and was an all around very active and outdoorsy man. It was heartbreaking to witness his physical capacities sharply decline as ALS took away his abilities to walk, talk, and eventually breathe. He passed in December of 2018, only about a year and half after his diagnosis."
"I first became involved with the Golden West Chapter of The ALS Association through the Napa Valley Ride in 2017,” said Leila. “I then learned about the Jim Tracy 5k to Defeat ALS at my school, San Francisco University High School, and joined the Student Planning Committee in 2018.”
Leila never met Coach Jim Tracy, who died from ALS in 2014, but the legacy of his impact on the students at SFUHS was clear, both of his efforts as a coach and the experience of his battle with ALS. After Jim passed, a group of his cross-country and track runners at SFUHS began the Jim Tracy 5k to Defeat ALS, and it is now in its seventh year, having raised over $150,000 for the ALS community in Jim’s memory. “I have the immense honor of being event chair for this year’s Jim Tracy 5k to Defeat ALS,” said Leila. “Thanks to the incredible generosity of friends and family who donate year after year to our fundraising efforts, my family’s team has now collectively raised more than $25,000 for the ALS community over these past four years!”
"While ALS has taken much from my family and others like mine, events like the Jim Tracy 5k have given us so much to be hopeful for. The community we have found has brought us comfort in knowing that we are not alone in our battles with ALS, the strength to push through these struggles, and hope for a world without ALS."
“Although my family has been hit hard by ALS, it doesn’t define us,” she continued. “In fact, it motivates our family to stay active in the ALS community because we know we can make a difference. That’s why I have many goals for this year’s Jim Tracy 5k, all of which lead to raising more than ever before for those affected by ALS with our ambitious event fundraising goal of $75,000. However, accomplishing these fundraising goals is only possible through the generosity and support from all of YOU -- our participants and donors, those affected by ALS in our community, UHS students and faculty, Bay Area running and athletic clubs, and so many more. I invite all of you to join me in fighting ALS and honoring all those lost to and affected by this disease.”
Please join Leila’s efforts and register today for the 7th annual Jim Tracy 5k to Defeat ALS on Sunday, April 25, 2021.