Our daughter Olivia (9) has a rare chromosome deletion called Phelan McDermid Syndrome. While she is non-verbal, she can certainly “shout out” to let everyone know if she is happy, upset or just wants to be included in the conversation! So we thought The Shout Out Challenge was an appropriate name for this project to give Olivia and others like her a voice. But we need your help!
Phelan McDermid is a nasty, rare and very under-diagnosed condition. There is no known cure or treatment. To help change this, the first step is to raise awareness. With awareness comes research and much needed funding.
Here is how you take The Shout Out Challenge:
Share this link www.theshoutout.org/video with anyone famous you know or follow on social media
Ask them to give Olivia a shout out, i.e., make a short video saying “Hi Olivia, I’m <name> and I’m giving you a shout out to raise awareness for Phelan McDermid Syndrome” and then share that video on their feed using the hashtag #shoutoutchallenge
That’s it - we’ll then put that video with your name/picture on our Wall of Fame to say thanks!
Thank you so much for visiting this website and helping Olivia by giving her and thousands of others a Shout Out. It means the world to all of us.
Lots of Love,
Andy, Jenny, Olivia & Sophia Kulina