June 21, 2019
is Syngap Awareness Day.
Get ready to "Splash for Syngap"
What is Syngap Awareness Day?
Syngap awareness day is a day where all families affected by Syngap around the world are encouraged to participate in an online event to celebrate our children, our community and raise awareness about Syngap. We hope we can shed some light for families and friends on what Syngap is and how wonderful our children are. In spite of the obstacles that Syngap patients and their families face together they overcome obstacles daily finding beauty and joy in the smallest ways.
Our hope on this day is that Syngap affected families feel part of this amazing community and realize that they are not alone. We are all in this together.
We also hope that by raising awareness, families with undiagnosed children might recognize their kids in ours and push for genetic testing to get the answers they need. Understanding that their children might not have Syngap we are still hopeful that they might get answers and find their own community.
Why June 21?
The Syngap gene is located on chromosome 6 on the loci 21.32 of the p arm. So we decided 06/21 was a perfect day to celebrate our children. It turns out it is also International Music Day and all of our kids love music!
Splash For Syngap
Another thing our kids absolutely love is Water! We decided to celebrate them with their favorite thing, making big Splashes! On this day, our goal is not to raise money but to spread the word on Syngap.
Here is how you can participate:
1. Add a Syngap Frame to your profile picture ( click on edit profile picture - add frame - type Syngap in the search)
2.Post a water themed video or picture on the Splash4Syngap facebook page: https://www.facebook.com/SyngapGlobalNetwork with #Splash4Syngap
3.Share the Awareness video that will be released that day
4. Organize a Syngap families get together.
We thank you for helping us raise awareness for Syngap. The Splash4Syngap logo is free to use for all Syngap1 families.
If you have any questions please contact us at firstname.lastname@example.org