Dear Ellen DeGeneres,
I just wanted to say thank you so much even though you actually haven’t done anything yet. But 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 awareness and we need money!!! And 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 and the most amazing thing has happened on our journey…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 I am greedy and I want more, I want to find you Ellen. I want you to hear our stories and I want you to tell people about us. So please Ellen look for #BeingDory and help this amazing group of people be heard!!! Thanks in advance for your time!