I haven’t written anything that I wanted to get right as much as this post.
I hope you will help me.
My friends, Chris and Jennifer, have a beautiful daughter named Sydney. Sydney has Smith Magenis Syndrome (SMS).
I’ll bet you don’t know what that is. The best way to learn is to listen to what the families affected by SMS want you to know.
If you’re feeling a little overwhelmed after watching that, you’re not alone. I’ve seen it many times and each time, I feel the same way.
The SMS Research Foundation was started by my friend Jennifer Iannuzzi, and another mom to an SMS daughter, Missy Longman. In addition to everything their families deal with on a daily basis having both SMS and typical children, these women created and run a foundation that gives hundreds of thousands of dollars to SMS Research.
To me, they are giving a lot more than money. They are giving hope for a brighter future to families affected by SMS.
How do they do it?
They just keep swimming.
Whatever challenges they face each hour, day, week, and year, they keep going. They find a way to deal with it and they move forward.
I know of no better definition or example of strength.
“Just keep swimming” comes from Dory in Finding Nemo. It’s fitting that the SMS Research Foundation’s next big fundraiser is about Dory.
On June 18, the SMS Research Foundation will premiere Finding Dory at the Prospector Theater in Ridgefield, CT. The Prospector Theater is a unique and wonderful place. It is a first rate theater, run by employees with special needs.
How Can You Help?
This post is not a plea for a donation (though feel free to donate, of course). We need to make this fundraiser HUGE.
Please plan to attending on June 18th. I will share details as the event approaches.
What we’re really hoping for is to get Ellen DeGeneres, the voice of Dory, to somehow help us. Maybe she would donate signed items to auction off. Maybe she would talk about SMS on her show. Maybe she would come to the event.
None of that will happen if she doesn’t know about it, which right now, she doesn’t. We would love to have enough people asking for her help to get her attention.
Share this post any way you can. Contact Ellen. Post on her Facebook page or send her a Tweet (please use #BeingDory). Whatever you can think of to help us make Ellen aware of the SMS Research Foundation and this fundraiser would be great.
If Jen and Missy can do everything they do for their families, and provide hope to all the other SMS families out there, we can do this.
Thank you for helping.