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Wilton Mother's Foundation Advances Fight On Daughter's Rare Disorder

Jennifer Iannuzzi of Wilton co-founded the Smith-Magenis Syndrome Research Foundation in 2010. Her daughter, Sydney, has the medical condition, which is a rare chromosomal disorder.
Jennifer Iannuzzi of Wilton co-founded the Smith-Magenis Syndrome Research Foundation in 2010. Her daughter, Sydney, has the medical condition, which is a rare chromosomal disorder. Video Credit: HooplaHa - Only Good News
Jennifer Iannuzzi of Wilton talks about Smith-Magenis Syndrome. Photo Credit: Screen grab from HooplaHa video

WILTON, Conn. -- Jennifer Iannuzzi of Wilton co-founded the Smith-Magenis Syndrome Research Foundation in 2010 not because she wanted to, but because she absolutely had to do something.

Her daughter, Sydney, was born with the rare chromosomal disorder on Dec. 23, 2005. Iannuzzi noted developmental delays in Sydney from the outset, but she and her husband, Chris, did not receive a confirmed diagnosis until two years later.

Iannuzzi’s challenge came after learning her daughter’s diagnosis. Information was essentially non-existent. No organization was specifically dedicated to further progress in SMS. Iannuzzi took on the challenge.

  • What : LIGHTS, CAMERA, RESEARCH
  • Where : The Prospector, Ridgefield
  • When : Saturday, June 18, 9 a.m. to noon
  • Why : A fund-raiser for the Smith-Magenis Syndrome Research Foundation

“The goal of the foundation is to find a therapeutic intervention that can make life easier and better for these kids and families,’’ Iannuzzi said on a recent HooplaHa video.

Iannuzzi and Missy Longman, a Florida resident whose daughter also has SMS, started the foundation. “I was very supportive and excited about the prospect of starting a foundation,’’ Chris said. “I give my wife credit for having the foresight in deciding that we were just going to do it ourselves.”

Jennifer also frequently blogs about advocacy for special needs children on StrengthforSydney.org . Her homepage includes a list of 10 things parents of special needs children should do. One of them is changing perspective.

“From a parent's perspective, I now have a caseload of one,’’ said Iannuzzi, who left her career as a social worker after her three children were born. “My only concern is that my child’s needs are met. To be a fair advocate you need to remember that the team you are a part of has obligations beyond your child and sometimes your needs cannot be met instantly. If you come at it with this understanding I can assure you will experience less hostility, less aggravation, and more of a team approach to getting your child’s needs met.”

The SMS Research Foundation will also host a benefit at The Prospector in Ridgefield on Saturday, June 18. The fundraiser will include the new Pixar movie, "Finding Dory," along with a video game tournament, balloon maker, and face painting. Tickets are $20 for children and $30 for adults.

To learn more about the event at The Prospector, click here . Click here to watch the HooplaHa video, here to visit the SMS Foundation website and here to visit StrengthforSydney.org.

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