By Mayssa Peunemany | WAA Volunteer Journalist 

This fall, Washington Autism Alliance (WAA) welcomed Lizz Carson as the new Community Engagement Coordinator.  For Lizz, this wasn’t just a career change–it was a profound life shift, bringing her and her family into a community that embodies hope and support. Joining WAA wasn’t merely a job; it was a calling. To her, WAA represents more than an organization–it’s a lifelong network of connections, resilience, and advocacy for individuals living with lifelong conditions. 

Seven years ago, Lizz gave birth to her beautiful daughter, Cambria. Not long after, Cambria was diagnosed with Alagille Syndrome–a rare genetic disorder affecting multiple organ systems, including the liver, heart, and nervous system – and slowing development. For the first two years of Cambria’s life, Lizz navigated this complex diagnosis as a single mother. She found herself searching for resources and support, but because Alagille Syndrome is such a rare disease, the network of people that had experience was small and spread around the world. Cambria’s diagnosis came with many comorbidities, including a condition called Moya-Moya, where the arteries in the back of the brain are so narrow they cause random stroke events in those affected. Cambria experienced one of these events when she was just under a year old. This occurrence only made Cambria’s exceptionally rare, in fact the nearest person with the same comorbidities and symptom severity was in Spain, navigating their own challenges. Lizz initially connected with the  Alagille’s Alliance, an organization focused on the development of treatments for Alagille’s Syndrome and funding and promoting drug trials. While the drug trial they were able to help Cambria qualify for helped Cambria immensely, Lizz was looking for an organization that could help support her and Cambria beyond treatment plans and clinical trials. 

Three years ago Lizz and her partner David made the decision to move to Washington from their hometown of Portland, Oregon. This decision was largely based on the fact that rights to therapies for individuals with intellectual and developmental disabilities cannot be limited by insurance in Washington State. This law was passed after Arzu Forough, founder and President of WAA, advocated for legislative action through WAA for seven years. It was after this move that Lizz found what she was missing: a community of parents that understood what it is like raising a child with a lifelong condition. Through an Employee Resource Group at Microsoft, Lizz first heard of the Washington Autism Alliance. With a new community connected to WAA, Lizz discovered the UW Center for Intellectual and Developmental Disabilities, traditionally serving individuals with autism and their families. It was here that Lizz was able to get Cambria the help she needed to start thriving.

“The people working with WAA are passionate about what they do and connecting with people to help them and their families thrive,” Lizz says of her new coworkers. As the new Community Engagement Coordinator and a mother who has turned to the community for support, Lizz encourages anyone looking for a knowledgeable support system to become a WAA member. Lizz says that it is because of the support and warm welcome from the WAA Staff she is optimistic about the future, despite all its uncertainties. As a Community Engagement Coordinator, Lizz is determined to connect the people of Washington to build and grow a strong and supportive community. 

“It changes everything when you have the support,” Lizz shares. With WAA’s guidance, Lizz feels deeply connected and involved in Cambria’s life. She feels as though she has a community that supports her balance in life that allows her and her partner to be alleviated of the burnout that comes from learning to be a parent to a child with disabilities Her journey in finding her rightful place at WAA has helped her realize that there is a whole community of advocates that know you don’t have to be neurotypical to thrive, Having the support she has and the resources, Lizz wants to set an example for Cambria for the future, to show that she, and countless others, are valued, accepted, and capable of achieving their fullest potential. 

Lizz and Cambria’s story is one of resilience, hope, and the power of community. Through her journey, Lizz reminds us that “It is important that we find those moments of joy and hold on to them, taking each day as it comes and we cherish the good.” It is amazing how much the support of others can do, every day is different, there may be ups and downs, but it is important to cherish the small victories, finding the strength in the face of challenges, and building a future grounded in compassion and connection.