About Us

The DDX3X Foundation is a nonprofit organization founded in 2015 to find a cure for DDX3X syndrome. As part of our mission, the Foundation will support existing research, education, and treatment programs focused on DDX3X syndrome. The Foundation has three primary functions: research, connecting families, and raising awareness.

Formed by parents of DDX3X children, we understand the challenges associated with raising a child with a DDX3X syndrome. Many of the families affected by DDX3X went years without knowing the cause of their child’s delays. We exist to connect and support you.

Our Mission

Our mission is to connect families, resources, and the medical community to advance research for a cure to DDX3X syndrome. Our ultimate goal over the coming years is to accelerate brain function in individuals affected by DDX3X syndrome through advances in gene therapy and pharmaceuticals.

Our Partners

Our Stories

Annabelle

Annabelle was diagnosed in January of 2016 at the age of ten. She is a fraternal twin and we suspected from the day she was born a full pound and a half lighter than her sister that something was not right. Annabelle achieved all of her milestones... read more

Lucy Douglas

Our sweet Lucy was diagnosed in October 2016 with DDX3X. The pregnancy and delivery of Lucy was completely normal, but we knew at a very young age that something was not quite right. Although a very happy and calm in nature, Lucy was a... read more

Mason Platt

Mason was diagnosed in March 2017 with DDX3X and has been confirmed as ‘de novo’. He is now 7 years old and had a rocky few years but is the happiness little boy you could ever wish to meet. He had a rare heart condition at birth and... read more

Rose Michel

Rose was born the 3rd of May 2014 in Paris, France. We did not notice any initial developmental challenges until around nine months when she wasn’t sitting independently and seemed sensitive and stressed. At that point, we turned to our... read more

Nico & Josie

Nicole Marie “Nico” and Josephine Jude “Josie” Mueller are our identical twin daughters that were born in 2007. Both have a mutation on their DDX3X genes, which has caused them to have cognitive and physical disabilities. In utero, the... read more

Virginia Frances

Our sweet Virginia was born in March of 2005. After a completely normal pregnancy, she was breech, so the doctors flipped her and induced delivery. Virginia was very colicky from the start, and was late with all of her milestones. After 10 years of... read more

Peyton Grace

Peyton is our smart and joyful daughter who is full of spunk and a ton of fun. She brings happiness to everyone that is lucky enough to know her. All of these things trump her DDX3X diagnosis. Peyton has difficulty with every aspect of her... read more

Lanie

My beautiful daughter, Lanie, has been through years and years of testing. Early in infancy we knew that Lanie was unique. She was not reaching milestones and was classified as having a developmental delay. We knew something was not quite right.... read more

Mila

Mila came into our world the day after her due date on September 9, 2012 following a “typical” pregnancy/no complications. Immediately, however, we noticed she was hard to soothe and to nurse. Within a few months, our pediatrician... read more

Anie looking cute with a white ribbon on her hair

Annie

Annie has a twin brother named Buck. They were born pre-maturely, at 31 weeks gestation. Both came into the world very small, but as they grew, a disparity became apparent between the two in terms of their rate of development. At the age of 3, Annie... read more

Emelyn Grace

Emelyn is a social butterfly with a giggle that brings a smile to the face of every person she meets. Emmy, as she’s affectionately known by most, loves water, music, books, and people. She’s yet to meet a stranger. Despite the lack of verbal... read more

Kate

Kate was born on October 9, 2008 after an uneventful pregnancy. Early on she had a terrible time sleeping, abnormal cry and was unable to keep down feedings. We were referred to a specialist when Kate was six months old and were told that she... read more

Lena

Our lovely Lena was born in May 2014. She was happy and healthy, other than being diagnosed with microcephaly. At her 4 month checkup we were referred to a developmental pediatrician. That began a year of test after test, endless doctor visits, and... read more

Braylee

Braylee was born February 2, 2014. Pregnancy was normal, but she decided to make her appearance at 36 weeks. She spent 3 weeks in the NICU due to failure to thrive, low blood sugar, breathing abnormalities and two different CHDs. She had open heart... read more

All Stories