Dom DiSiena is a father of three (Domenic, Tessa, and Amara), and husband to Margaux. Their youngest Amara is impacted by an MYT1L deletion. Dom and his family reside in NJ, where they are active members of the community. Dom coaches several youth sports and is also a board member for the youth football program.

Rene is a Licensed Clinical Social Worker and former LoneStar LEND fellow who provides therapy services to individuals and families. She lives in Houston, Texas, and is a proud single mom of nine children. Her youngest daughter, Charleigh, is a 3-year-old gem impacted by an MYT1L mutation. In her free time, Rene advocates for family rights and embraces the joyful chaos of motherhood.

Jennifer is a music teacher living in the Hudson Valley north of NYC with her family and 5 year old daughter diagnosed with MYT1L. She enjoys teaching fitness classes and hosting monthly cooking groups at her house.

Carrie resides in Los Angeles with her husband, Todd, two adolescent age daughters, and their two golden retrievers. Their youngest daughter was diagnosed with the MYT1L deletion as a toddler. Carrie works as a residential real estate agent and spends her free time attending club soccer games for her oldest daughter, planning/hosting community and school fundraisers, and playing tennis.

Joanne lives in Northern Ontario, Canada with her husband Ben and her three daughters. At 6 months old, her youngest daughter, Eliana, began showing signs of some developmental differences. Though these differences were mentioned to her daughter's pediatrician, she was consistently told that there was nothing to worry about and that Eliana was just a "relaxed/lazy" third child. Joanne kept advocating [and has never stopped] and found out that she could start Eliana in physiotherapy without a referral, so Eliana began her journey of therapy at 13 months old. Eliana has been receiving speech therapy, physiotherapy and occupational therapy for more than 2 years. In January 2025, Eliana received a Global Developmental Delay diagnosis and in April 2025 and after 6-8 months of testing and waiting, Eliana received her MYT1L genetic diagnosis. It has not been an easy road to find the right help, get the right tests and find someone to listen. At 3.5 years old Eliana has started to take independent steps, is learning to communicate using an iPad and pictures and more. Eliana is registered to start Junior Kindergarten in September 2025. Joanne has a desire to support other parents and families navigating the choppy waters of finding the right support for their child - the systems in place are not clear and it can be completely exhausting. Joanne has a Bachelor of Arts in Psychology and has worked in the adult developmental sector since 2012 providing support for adults with developmental needs through direct support, intake processes and creating personal plans to help them design and live the life they want to live. "I have two older children [7 and 6] and I could not tell you when they isolated their index finger to point at something, but I can tell you when Eliana did! And, boy, did we celebrate! We cry and we grieve some things, but we celebrate and love and journey together in a way that is life changing for everyone involved!"

Jessica Hendrix lives in Cincinnati, OH. She is married to her husband Josh and has 2 children. Her oldest son was born in 2020 has MYT1L (variant). His initial diagnosis was developmental delay and apraxia until genetic testing at age 4. He is currently on an IEP and working with speech PT & OT. He enjoys riding his bike, playing soccer, and hanging out with his sister who is 2 years younger than him. He is in a tiny tot dance class and swimming lessons with her. Jessica holds a Master of Science degree in Nursing and works as an Adult Acute Care Nurse Practitioner, currently in Cardiology and previously in Trauma.

Tanya and her husband live in Cape Town, South Africa, where they are raising two beautiful children. After years of concern and confusion, their eldest daughter was diagnosed with an MYT1L gene deletion in early 2024. They are currently the only family registered in South Africa with this rare genetic condition. Tanya is devoted to supporting her daughter in every way possible, including forging connections with other families worldwide. Building a community for these children and sharing experiences and knowledge globally is vital work that Tanya hopes to drive and support for years to come.