‘Just Keep Swimming’ may be the theme of Jennifer Iannuzzi‘s life. The Wilton mom of three kids has been tireless in working to raise awareness and research money for Smith-Magenis Syndrome, the genetic condition which her 10-year-old daughter, Sydney, was diagnosed with in 2007. Three years later, Jennifer and another SMS parent, Missy Deacon Longman, started a foundation (SMS Research Foundation, or SMSRF) that has raised more than $500,000 to support much-needed scientific research for this very rare disease.
This year, Jennifer is organizing a fundraiser called, “Lights, Camera, Research” that will be held June 18 (9 a.m.-noon). It’s a first-run showing of the movie Finding Dory, the sequel to Finding Nemo and starring Ellen Degeneres. The movie will be released by Disney’s Pixar the day before.
“I needed to do something different. I’ve done a spin-a-thon, I’ve done running races, it just doesn’t capture a lot of people. And I didn’t really have a venue to capture more than 16 people for an hour. I needed something new and different,” Jennifer says.
Jennifer found a great venue for this event, as all the details came into place. SMSRF is holding the event at Ridgefield’s Prospector Theater, a movie theater that was created to help employ individuals with special needs.
“When the Prospector was built about a year ago, I knew that was a good venue. What I’d do with it, I didn’t know, but it was such a perfect venue for where we live.”
Jennifer’s first thought for a fundraiser was to have a fun family day there, where people could see a first run movie. “It was the only thing that could include everyone. We thought about a formal event for adults, a comedy event or karaoke. But I knew I wanted something for family.”
Checking out the list of 2016 movie releases, Finding Dory was a good fit.
“Finding Nemo was so great–the three main characters all had some kind of special need: Nemo with his underdeveloped fin; Marlin who is paranoid and afraid, and can’t get out of his own way; and Dory with her forgetfulness. All the fish had something, and there’s so much material in there. Plus, the release date was right, and June seems like the perfect time. So I started building around that,” Jennifer says.
In addition to the movie showing, there will be a video game tournament for older kids, face painting, balloon making, food and refreshments. But most special of all, the event will be able to include the person at the heart of it–Sydney.
“Every event I’ve done has not been conducive to having Sydney be a part of it, and that has always felt really wrong. Not that we’re doing the fundraiser for her, but we’re doing it because of her and others like her. When you’re doing a fundraiser, and she can’t even come, and I can’t include her in an event? It just felt so wrong all these years.”
Jennifer is moved by how everything has come together. “It wasn’t just Finding Dory. It wasn’t just getting The Prospector. It’s one of those experiences where all the pieces fell into place in the right way. That’s what has gotten me so excited about it.”
Finding Ellen
Finding Dory star Ellen Degeneres is known for being very generous to lots of organizations, with both her time, money and exposure on her show. She recently received the People’s Choice Humanitarian Award for her contributions. That got Jennifer thinking.
“I was watching it, and she has done unbelievable things for charities, just simply by saying the name of the charity or showing up at something or talking about them. I was blown away, but then she got up to accept it and said, ‘I can’t believe I’m getting an award for doing something I should do, which is be a good person.’ I was listening to this and thinking, All this woman has to do is say ‘Smith Magenis Syndrome’ and people would listen. It just got me thinking.”
Jennifer wrote a Facebook post, saying, ‘Wouldn’t it be great if Ellen could give us a shout out.’
“This syndrome is so rare and so unknown that just to have her say those 3 words on TV could do INCREDIBLE things for our SMS community. SO anyone out there know someone who knows someone who might be able to help me make this happen???:) It is a long shot, I know. But I also know that if I don’t ask then it definitely won’t happen. Anyone out there have any suggestions on how I could get Ellen’s attention???
That post inspired others in the SMS community. People began posting pictures of their family members with SMS, tagging Degeneres in their posts, and adding the hashtag #BeingDory. They wrote about who these children were and how amazing they are.
Jennifer’s partner in the SMSRF, Missy Longman, also posted something profound.
It started with two little girls, in different parts of the country, who were both diagnosed with a rare disorder called Smith-Magenis Syndrome (SMS). Two moms, devastated by the diagnosis and the features associated with it (self-injury, aggression, developmental delay, sleep disorder, frequent meltdowns and tantrums, varying medical issues), needed a Dory. But, SMS is rare and no one knew what to do. So, from across the country, they somehow found each other and became each other’s Dorys. Together, they navigated the deep, open waters of special needs, sharing stories, fears and triumphs. Together, they learned that research funding for SMS is limited. So, together they started the SMS Research Foundation and have helped to raise hundreds of thousands of dollars championing this cause.
But, so much more needs to be done. This diagnosis can have a devastating impact on families. We are determined to change the prognosis of SMS but we need more Dorys!
Ellen, will you be our Dory?
Another SMS mom wrote that children with SMS are very much like the character of Dory. “Dory’s character ‘lives in the NOW,’ much like our kiddos with #smithmagenissyndrome Her character also shares a valuable lesson for families on the journey with SMS #justkeepswimming.’”
Jennifer has lost track of how many social media posts there have been from SMS parents, siblings, friends, and more, as the effort ripples out in waves through social media. Some high school and college students have taken up the call, posting pictures and holding up posters, all appealing to Ellen to be the SMS community’s personal Dory.
“One of the posts we put on the research foundation FB page has had over 30,000 views, we’re probably over 1,000 shares. It’s gotten bigger than me. People are posting and sharing and we’re not even sure where they originated from. Families I didn’t even know existed have come out of the woodwork and I thought I knew a lot of SMS families,” marvels Jennifer.
There have been posts from Mexico, Europe, Australia. “It feels really nice. One SMS mom reached out to me, and wanted to donate a raffle item. We chatted on Facebook, and I learned that her 20-year-old daughter had been a late diagnosis. All the struggles she went through, and people never understood what she’d been through. She’d never felt heard. Finally getting the diagnosis was so validating for her. She has just jumped onto the bandwagon, because the potential for being heard is such a good feeling. Maybe even more than delivering Ellen to anyone–what are our chances? Maybe, maybe not. But what I think we’ve inadvertently delivered to people is the chance to be heard. The inspiration, the hope, the motivation has ignited the SMS community. That’s what people need more, than actually Ellen. Would I love Ellen? Yes. Would it probably mean money donated to the foundation? Absolutely, of course I want that. But more than that, we ended up giving the community a voice. For that I’m grateful.”
That, says Jennifer, has been eye-opening for even her.
“I didn’t appreciate how much the SMS community needed to be heard, and it made me think of the power of being heard. Then I totally underestimated how much the friends and family of the SMS community needed to do something, but didn’t know what to do. People go to fundraisers, they donate money, they show empathy and concern. But what could they really do? Taking on their own fundraiser is a daunting task–not everybody is up for that challenge or should feel a responsibility to do that. It’s a lot to ask of people in the community. But something like this, through social media and from your own home, you don’t have to spend or donate money, you don’t even have to move. All you have to do is click ‘share,’ and that’s way more powerful than I ever imagined.”
Plus, the more people in the SMS community she connects with, the more Jennifer says her mission is reinforced.
“I think this is a turning point, it really legitimizes the foundation. That we are here to move SMS research forward and to continue reaching for hope. What I like to remind families is to stay positive, to keep moving forward–to keep swimming, right? That research makes a difference. Because it doesn’t feel like a quick fix, that doesn’t mean to give up on it. You have to commit to investing in research. And it gives the community the comfort of knowing we have the same goals in mind that they do–to make life better for our kids.”
Explaining SMS
Jennifer says because SMS is so rare, oftentimes people who aren’t familiar with SMS can’t grasp what life is like for families like hers.
“Like any issue, it’s really hard. It is an incredible difficult disorder, but what makes it even that much harder is no one knows what you’re talking about. It’s so frustrating to have to live through all those things and then have to go explain them all. You have to prove to people that it’s difficult, because no one has ever heard of it. That’s a hard place for parents to be when they’re living it and doing it every day, and no one understands.”
Last year, Jennifer and the SMSRF ran a campaign called “Ask Me What It Is!” that grew out of what she says is frustration. “No one knows what we’re going through.”
“We want people to ask us so we can spread awareness of what SMS is. I think last year gave people a different kind of voice, and this year it gives us a different voice of who our kids are,” she says.
The money that the SMS Research Foundation has raised so far has helped create the SMS Initiative at Baylor University, and at least five research papers have been published thanks to what the foundation has done.
What can you do? Share this story, and tag it with #EllenDegeneres #BeingDory. Visit the SMS Research Foundation’s Facebook page, and share the posts of others. For more information about SMS and the work being done by SMSRF, visit the foundation’s website.