Help researchers connect with our families and remember the “why”

Sometimes working in a lab can make it hard for researchers to remember why the work they do is important.

At our ASXL Research Symposium in July, we are bringing together most of the top researchers in the ASXL field. These videos will help them vicariously experience a day our lives. They can live the good, the bad and the difficult right along with us and hopefully come away feeling inspired and motivated to continue their research to make a difference in our children's lives.

We will be creating a 5-minute video for each ASXL Syndrome (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome).

How to submit videos and pictures

Thank you for being willing to share an intimate look at your family's life with us to help researchers see and feel why the work they do is important.

Please share photos and/or video clips of 5-30 seconds in any of the following categories:

• Mornings (getting ready for the day)

• Learning (school, therapies)

• Daily play (time with toys, siblings, friends)

• Bad days (illness, seizures, tantrums, sleepless nights)

• Good days (moments of joy, special family time)

• Night time (winding down for sleep)