2026 Rhode Island Believe Walk and 5k Run

My name is Elizabeth Cox and my husband, Kyle, our 4-year-old boy-girl twins, and our 2-year-old singleton live in Warwick, RI. 

Our son, Luke, was diagnosed with Dup15Q at three years old after our developmental pediatrician recommended genetic testing. Dup15q syndrome is a rare, lifelong neurodevelopmental disorder caused by an extra copy of a portion of chromosome 15. Common features include moderate-to-severe hypotonia in infancy, motor delays, intellectual disabilities, significant speech delays, autism spectrum disorder (ASD), and seizures, including infantile spasms and a range of medical problems including heart problems, GI issues and sleep problems. With this diagnosis also comes a risk of sudden, unexplained death about .5-1% each year. Luke had already been diagnosed with autism and global developmental delay. Dup15Q is the most frequently identified chromosome variant in individuals with autism, despite the fact that genetic testing is not widely completed for people diagnosed with autism. 

Up until about 18 months, we had limited to no concerns. Luke was meeting developmental and speech milestones right alongside his twin sister. He breastfed with an awesome latch, loved tummy time and had great head control, clapped, sat up, walked and ran on time. He was speaking just fine for his age, singing full songs, and very engaged and social with us. Between 18 months-2 years things were slowly starting to change. He was more hyperactive, struggled with attention and often ran away from us (Fast!). At 2 things became blatant: he had a major speech regression at 2 where he lost all functional speech and started putting things in his mouth more, covering his ears with his hands, rocking back and forth and completing stopped responding to his name. He’s benefited from music therapy, speech therapy, occupational therapy and this year he started his morning preschool, where he receives extra supports and a whole lot of love and kindness.

Luke is now 4 years old, non-speaking, and continues to face many challenges associated with Dup15Q Syndrome. Following his most recent regression, he lost all of his signs and language. An abnormal EEG suggests that underlying brain activity is the most likely cause of this loss.

In addition to the abnormal brain activity, Luke has been diagnosed with global developmental delay, autism, hypotonia, gastrointestinal issues, and ongoing sleep difficulties. We have also been told that he will likely have an intellectual disability.

As he grows, we will always need to remain vigilant for seizures—a reality we carry with us every day. Luke will require ongoing medical care and will likely have countless doctor’s appointments throughout his life. Despite all of this, he remains a deeply loved and cherished little boy who continues to show us strength in ways words cannot.

But we know that this is just a very small part of Lukey. Luke is the epitome of warmth and kindness and one of a kind. He sees the world so beautifully and finds the good around him. He is often seen laughing and smiling and we describe him as the happiest guy in every room. At every vacation or party we always seem to notice that Luke is having the most fun out of everyone. He is also very gentle, go with the flow, the best hugger and cuddler, and very social in his own way. He may not speak to you but he may put his forehead to yours or rub your arm to show you his affection. Despite having limited language, Luke has never had a problem showing others that he loves them. Luke is a loving brother and loves hugs and playing with his two sisters. When they take his toys, as sisters do, he could care less. He just loves to be with them. Luke has taught us far more than we have taught him. He understands what truly matters in life. 

My husband ran the 2026 Newport Marathon in honor of Luke, and we raised over $9,000 for the Dup15Q Alliance. When we received the diagnosis of Dup15Q many of the doctors we saw had very limited information about Dup15Q. The Alliance and the Dup15Q Clinic changed our lives: they answered our questions and provided us with a community of parents also navigating this rare disease for their Dupers. The Alliance is actively working to fund clinical trials that could reduce symptoms for those diagnosed with Dup15Q and improve their quality of life. 

Our mission for this walk and 5K is to more than double our first fundraiser for the Alliance and raise at least $25,000 to support families with this rare disease, including ours, and help to fund clinical trials. 

If you’re able, please consider making a donation or becoming a sponsor for the event. Your support would mean so much to our family and to the entire Dup15Q community. We would also be honored to have you join us—whether walking or running—in support of Luke, others affected by Dup15Q, and all children living with disabilities.

We hope to see you there. 

Warmly, 

Elizabeth Cox 

Host of the Believe Walk and 5K 

Mother to Luke Cox, diagnosed with Dup15Q (interstitial duplication) 

We are parents, grandparents, professionals, and advocates providing support for patients, families, and caregivers. We are passionate about personal connections, family support, community awareness, and scientific research.

Dup15q Alliance connects families online through our Parent Support Facebook Group and virtual connection groups, face-to-face through regional gatherings, and at our family conferences. In addition to connecting families, Dup15q Alliance has several family support programs for each stage of the Dup15q journey.

Dup15q Alliance funds the LADDER Database and works closely with pharmaceutical partners to identify research in varying modalities and endpoints. Our goal is to improve clinical care and discover treatments, such as behavioral and drug therapies, targeted specifically for Dup15q syndrome.

We have 17 operating clinics providing standardized care for patients with 15q disorders. Our clinics serve as a platform for robust research, including the collection of integral natural history data.