Wilton Mom Writes Heartfelt Letter to Ellen DeGeneres

Editor's note: Jennifer Iannuzzi is mom to Sydney, a beautiful young girl battling a non-familial chromosomal disorder known as Smith-Magenis Syndrome (SMS). Jennifer is co-founder of the SMS Research Foundation. The Foundation is working tirelessly to fight for people around the world who have been diagnosed with SMS. Can Ellen DeGeneres help? The first step is to have her read this letter from Jennifer. 

Dear Ellen,

I just wanted to say thank you. Just the very idea of you has brought an incredibly small, widely spread out, and very rare community that much closer together.

Last week The Smith Magenis Research Foundation (www.smsresearchfoundation.org) had an idea. Since we will be hosting a fundraiser that will showcase your new upcoming movie called Finding Dory, we thought why not reach out to you and see if you would give our Foundation (SMSRF) and our rare genetic syndrome called Smith Magenis Syndrome (SMS) a shout out on your show. Our children suffer from SMS and we could use all the help possible to raise awareness. We love you and in particular Dory and we thought it would be so perfect if Dory could help us get noticed.

Dory lives in each and every one of us Ellen. Every day when we wake up and face our kids and their long list of disabilities, which include cognitive impairments, global developmental delays, self-injurous behaviors, volatile mood swings, and a profound sleep disorder we Just Keep Swimming. We dig deep and find the humor in it and persevere to do the best we can for our kids. But unfortunately we need to do more…. a lot more. We need to let people know about SMS and we desperately need to raise money for research, because we know we can make life better for our kids,  we just need help!  We need someone who can help us get noticed and we are hoping that someone is you.

So, we all came together and we called ourselves #BeingDory and we set out to find you. In our journey to Ellen,  the most amazing thing has happened…People from all over the world have come together and shared their stories and jumped on the #BeingDory bandwagon and it has given us all hope, inspiration, and a purpose. It has brought us all that much closer together. People are starting to take notice and ask us what we are doing and why we are doing it and in the process total strangers are learning about Smith Magenis Syndrome.

Ellen, without even knowing it you have helped us and I am so grateful to you for that. But we need and want more. We want you Ellen -  to hear our stories and tell the whole world about us. So please Ellen, look for #BeingDory and help this amazing group of people be heard!

Warm regards,

Jennifer M. Iannuzzi, Co-founder and vice president of the SMS Research Foundation