Join our Facebook Group or attend one of our Meetups.
"It is truly amazing how this group has begun to reach across the world, uniting families together who felt so alone with the news. While social media can have its drawbacks, this group is a light, shining across the oceans. But mostly as a grandparent, it makes my heart swell to see all these beautiful, smiling faces and know that each of them is such a blessing to us all. " — Leslie Ray
A comprehensive look at DYRK1A-Related Intellectual Disability Syndrome at GeneReviews
Download a PDF printable version of a pamphlet about DYRK1A from Unique.
Download a PDF printable version of a pamphlet about DYRK1A from VKGN.
Participate in research to help better understand this syndrome.
Review past medical articles that has been published on DYRK1A patients.
Your Not Alone
“One thing I would say is reach out, Find support. Only you will ever know truly what it is to feel what you feel, but you will recognize yourself in the struggles and triumphs of others when you hear their stories, You are not alone.”
— Collin Farrel
So you just found out that someone you love has DYRK1A Syndrome. Your mind is probably racing. Here are some questions you might be thinking:
- What does this mean?
- Is there anyone else out there going through what we are going through?
- Will my child ever talk?
Trust me, we know how you feel. We have been exactly where you are and that's why we are here. We are a small but growing community of families that care for someone with a change affecting the DYRK1A gene. The change can range from being a small change in the DNA or bigger change in the Chromosome that affects the DYRK1A gene. These changes cause a loss of function meaning one of the DYRK1A genes doesn’t function properly. When one of the genes doesn’t function it causes a similar set of signs and symptoms that include:
- Microcephaly (small head and brain size)
- Low Birth Weight
- Feeding Issues at Birth (Frequent Vomiting)
- Speech and Language Impairment
- Developmental Delay / Cognitive Impairment
- Autism and/or Ritualized behavior
- Growth Delay
- Unsteady Gait
- Ear Anomalies
- Epilepsy / Seizures / Febrile Seizures
- Chronic Constipation
- and More
Science is still learning about this newly identified condition.