Get Support

Join our Facebook Group  or attend one of our Meetings.

"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

Find Information

Simons Searchlight’s Gene Guide DYRK1A-Related Syndrome.

A comprehensive look at DYRK1A-Related Intellectual Disability Syndrome at GeneReviews

English
Download a PDF printable version of a pamphlet about DYRK1A from Unique.

Dutch
Download a PDF printable version of a pamphlet about DYRK1A from VKGN.

Get Involved

Participate in research to help better understand this syndrome.

Find Research

Review past medical articles that have been published on DYRK1A patients.

You're 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 two DYRK1A alleles (variant forms of a gene) doesn’t function properly. When one of the alleles 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

• Urogenital Anomalies

• and More

Science is still learning about this newly identified condition.