As a foundation led by parents of DDX3X girls (and a handful of boys) we have chosen June 12 to be National DDX3X Awareness Day.  Many of the families will be in Rogers. Arkansas that weekend for a summer family fun weekend—a tradition we started in 2019 that was interrupted by the pandemic in 2020 but resuming in 2021.  As part of the inaugural Awareness Day we would like to start a 5K to help get the word out and of course to raise money for research.  We are looking for sponsorship for the Annual 5K and want to highlight companies and brands that can get behind the mission of DDX3X.  Our girls are fighters, athletes, rays of sunshine and as the parents of these rare kiddos, the dedication and support we give is second to none. 

What we need now is more people to be part of the studies underway as research will lead to more findings and that is what leads to pharmaceutical companies piloting drug therapy for interventions.  When all the DDX3X parents were recently polled to find out what would they want to help their kids with the most—the overwhelming response was verbal speech.  I honestly believe with science and the will of the parents and these kids, we will get there.

We hope you can be part of our first annual National DDX3X Awareness Day and consider joining us virutally for the 5K (or ONE mile fun run).  We are grateful for whatever amount you can contribute and  I can personally tell you every dollar raised will go to research.  Thank you for your continued support.  Love someone rare!

We will be with our family and our DDX3X family on June 12 and will celebrate this special day with everyone near and far.

Love Skylar's biggest advocate and cheerleader,

Lori 

The inaugural DDX3X Day will be held on Saturday, June 12, 2021. To commemorate the day, The DDX3X Foundation will host an international family day for DDX3X Syndrome patients and their families to participate in person or virtually in a community-building event. To increase awareness, The DDX3X Foundation is asking those that know someone impacted by the disorder to wear purple on June 12th, participate in a virtual 5k, and post on their social media accounts using the hashtag #DDX3XDay. In addition, in an effort to generate funding for research, the Foundation is hoping each impacted family will raise $612 in celebration of the 6.12 date and help reach the fundraising goal of $150,000 to develop Centers of Excellence for DDX3X Syndrome. Centers of Excellence are facilities with clinicians and staff who specifically understand the diagnostic criteria of the disorder and are dedicated to identifying and meeting the various needs of those diagnosed.