Small Town. Loud Voice.
A huge thank you to Semper Gratus for their continued support in creating awareness for STXBP1-related disorders and making a big difference in the lives of our families.
Semper gratus is Latin for “always grateful”. And they are a remarkable Pittsburg-based certified 501(c)3 do-good organization that has helped two of our STXer families in just the past few years.
This year, the organization’s founder and president, Ian Coyle, named the Snedecor family as the group’s 2025 Small Town Loud Voice St. Patrick’s Day party Guests of Honor. This year’s party, marking Semper Gratus’ 10th anniversary, will celebrate a decade of impact for Semper Gratus, and focus on raising awareness for autism and STXBP1. You can read all about the event here on TribLive and copied below.
Two years ago, Semper Gratus recognized the Sweeney family in the same Small Town Loud Voice category and awarded them with in-home accessiblity upgrades to make the caring of their STXer Lena easier. You can watch the award ceremony on YouTube here.
To date, Semper Gratus, has raised over $400,000 benefiting a number of nonprofits including the Leukemia and Lymphoma Society, the Cystic Fibrosis Foundation, the Muscular Dystrophy Association, Cerebral Palsy, STXBP1, the Down Syndrome Association and more.
(from TribLive Media, 3/21/2025)
Cassie Snedecor said she grieved when her son Jack received a level three autism diagnosis almost 19 years ago. “It’s the autism nobody likes to talk about,” Snedecor said. “He’s not like Rain Man or the Good Doctor or any type of autism you see on television.” Jack’s diagnosis comes with challenges such as Pica, an eating disorder in which a person eats things not usually considered food, and a habit of running away if he feels overwhelmed or uncomfortable.
Snedecor, of Allegheny Township, said she and her husband, Matt, began their family with Jack. With their experience as educators and familiarity with childhood development, they knew Jack wouldn’t be like other children. Despite being verbal, Jack can only express his feelings in short requests or demands. When he becomes overstimulated or uncomfortable, he exhibits self-injurious behaviors to express his feelings, Snedecor said. His condition means the family has to “Jack-proof” the spaces they’ll be in so he doesn’t hurt himself.
“We’ve been on this journey with him for almost 19 years now,” Snedecor said. “His needs and his hardships, that’s what we knew.” About two years after they had Jack, the couple were given the “best surprise” they could’ve ever had, Snedecor said. Their second son, Luke, introduced the couple to the world of raising a neurotypical child. “We got the best of both worlds with Luke,” Snedecor said. Snedecor said the couple may not have had more children if Luke, 17, hadn’t come along. Their experience with raising a neurotypical child encouraged them to grow their family. The couple also has Max, 13, and Lena, 9.
Their youngest child, Lena, was diagnosed in 2015 with STXBP1. A nurse told Snedecor she just had “bad luck,” after Snedecor had asked if Jack’s autism was related to the diagnosis. STXBP1 is a rare genetic disorder that affects only about 1 in 91,000 people, with fewer than 1,300 diagnosed cases worldwide. Lena was one of 500 when she received her diagnosis.
Lena is cognitively placed at the age of two and is unable to walk independently. Despite being completely non verbal, the Snedecors can always tell exactly what Lena is thinking. “She runs the house,” Snedecor said. “She’s a princess in every sense of the word… She’s the happiest child you’ll ever meet.”
The family’s efforts were noticed by Shaler-based nonprofit Semper Gratus, a group that supports pediatric patients impacted by cancer, disabilities and other diseases.
The organization’s founder and president, Ian Coyle, named the family as the group’s 2025 Small Town Loud Voice St. Patrick’s Day party Guests of Honor. This year marks the 10th year of the organization’s founding. This year’s party, marking Semper Gratus’ 10th anniversary will celebrate a decade of impact for Semper Gratus, and focus on raising awareness for autism and STXBP1.
The group has raised more than $400,000 for various groups that focus of pediatric patients, including the Leukemia and Lymphoma Society, which will benefit from a 5k Semper Gratus will hold the same day as its Small Town Loud Voice event.
“Guests of honor, they come and they use the Small Town Loud Voice as a platform to share their story,” said Coyle, a Leechburg native now living in Shaler. “The goal of them sharing their story is to help raise awareness of their daily challenges and the diagnosis.” Proceeds will benefit the Autism Association based in Pittsburgh and the STXBP1 Foundation.
The event is an opportunity for the Snedecors to help other families in their situation and, hopefully, get much-needed money to help those coping with the disorders.
Raising two children with disabilities forced the couple to think outside of the box when it came to daily challenges. For a while, the Snedecors had to approach raising their children with a “divide and conquer” method. Jack and Lena couldn’t be left unsupervised and Luke and Max are involved in multiple extra curricular activities. Snedecor said for a while, her neurotypical children had never been on vacation or to a restaurant.
That changed a little over three years ago when Lena was given a feeding tube, and she became eligible for nursing services through her and Jack’s secondary insurance as part of the Medicare/Medicaid programs. The family was given two nurses who split time with Jack and Lena for five days a week. Jack was able to be included in the care plan after he was diagnosed with epilepsy. He also has an anaphylactic dairy allergy and asthma that needs to be monitored.
“It changed our lives,” Snedecor said. With the support nursing services provided, Snedecor and her husband were able to attend Luke and Max’s games, concerts and other events they would normally miss to provide care with Jack and Lena. Snedecor was even able to return to her work as a teacher. The family ended up getting a camper where Jack could acclimate and go on trips with the family since he’s unable to be in a hotel. “I don’t ever want my other kids to be taken out of the limelight,” Snedecor said. “They’re amazing and deserve as much awareness and acknowledgement as my other two non-typical kids.” Snedecor said there are still good and bad days when managing life in general. She is grateful for how Jack and Lena have changed their family’s life. She said she doesn’t agree with the nurse that said she had bad luck. “I think that isn’t the case,” she said. “As we’ve grown and evolved and they’ve become their own little people as well, I know they’re here for a reason. They have taught all of us to be better people — they do that with everyone they meet.”
