Spinning benefit for SMS research, Nov. 13
Elevation Studios in Georgetown will host a Spin-A-Thon on Friday, Nov. 13, to benefit the Smith-Magenis Research Foundation, which was co-founded by Wiltonian Jennifer Iannuzzi five years ago.
The SMS Research Foundation is a nonprofit dedicated to funding research to improve the knowledge and understanding of Smith-Magenis Syndrome (SMS), a non-familial chromosomal disorder characterized by a recognizable pattern of specific physical, behavioral and developmental features.
Iannuzzi’s daughter Sydney has the rare syndrome that results from a small missing piece of genetic material within the 17th chromosome, known as a microdeletion.
Typical features of SMS, which is estimated to occur in roughly one in 25,000 live births, include:
- Frequent nighttime and/or early morning awakenings and daytime sleepiness.
- Oral-motor dysfunction.
- Varying degrees of cognitive impairment.
- Development delay.
- Chronic ear infections.
- Eye problems including strabismus and myopia.
- Broad gait/short fingers and toes.
- Decreased sensitivity to pain.
SMS Research Foundation
Iannuzzi formed the foundation with Florida resident Missy Longman, whom she met through the Internet in 2007. Longman is also a mother of a child with SMS, and the two corresponded for years about their daughters and their syndrome.
“We chatted about what we can do, what we need to do and what we hope people were already doing. As we researched, we realized that not a lot was being done in the world of SMS,” said Iannuzzi, who has lived in Wilton since 2002.
“It’s such a rare disorder and it really didn’t hit the scene, so to speak, until the 1990s. It wasn’t even defined much before then, so obviously, not a lot of research had been going on.”
It was then that Iannuzzi and Longman decided to create the SMS Research Foundation to fund SMS research, which Iannuzzi said, had been “a bit stagnant.”
“In 2010, we put in for our 501(c)(3) and did fund-raisers and pretty much started funding the SMS Research Foundation,” she said. “Our first year out, we raised over $50,000 between the two of us and we put out for people to submit proposals.”
Iannuzzi’s husband, Chris, who is a physician, helped put together a small scientific advisory panel and found two researchers to sit on it and view proposals that came in — ”and that’s how the foundation was born,” said Iannuzzi.
Since then, the foundation has grown in a number of ways, said Iannuzzi.
“We’ve grown in terms of the number of families that have jumped on board to do fund-raisers, which has been pretty incredible,” she said.
“In 2010 and 2011, it was just two of us — myself and Missy — doing fund-raisers, and then in 2012, a few more select families jumped on board, hosting little events around the country.”
Soon after, Iannuzzi said, an anonymous family made a donation and then “stepped it up into a $50,000 challenge grant.”
“If we were able to raise $50,000, they would match it by $50,000,” said Iannuzzi.
“With that, we gained so much momentum that this past year alone, over a dozen families from around the country jumped on board to do fund-raisers for us, and we not only reached the $50,000, but we exceeded it to about $58,000.”
Although the process of getting other families involved has been slow, said Iannuzzi, the foundation is also growing in that regard and two new positions have opened up on the foundation’s board.
“Altogether right now we have six board members — my husband and myself in Connecticut, Missy and her husband, Dan, in Florida, and then another couple out in California — Susan and Paul Diamond,” said Iannuzzi.
“We’re currently in the process of accepting applications for two new members on our board.”
Because SMS is so rare, Iannuzzi said, the other two board members will likely be from other parts of the country.
“The syndrome is so rare that it’s not like you’re going to find people in your back yard,” she said.
Because of the distance, Iannuzzi said, the board members hold phone conferences every other month to “chat about what direction we’re going into.”
Financially, Iannuzzi said, the SMS Research Foundation has grown “tremendously.”
“When we first began in 2010, our goal was one $50,000 grant per year,” she said, “and to date, we have probably raised almost $500,000.”
Money raised for the foundation goes to the SMS Initiative at the Baylor College of Medicine, where there are “two researchers focused on SMS research,” said Iannuzzi.
“Right now, we give them $100,000 a year to fund that program,” she said.
A number of fund-raising events for the SMS Research Foundation take place around the country each year, said Iannuzzi.
“I host a spin-a-thon every year, which has been really great. and I’ve also done a shopping night event and ran a marathon,” she said.
“We’ve done a triathlon and a 5K race, and in Florida, my co-founder Missy hosts a comedy and she has over 250 people come to that, which is great.”
Iannuzzi said a family in California does a big walk every year, which has been “really successful,” and other families have hosted golf tournaments to raise money for the foundation.
In June, Iannuzzi said, she is planning a “completely different” fund-raising event for the foundation.
“I haven’t posted much information about that, but it’s going to be like a family event at the Prospector Theater in Ridgefield,” she said.
“I’m super excited about it because that theater employs individuals with disabilities and I couldn’t think of anywhere better than a place like that helping other people with disabilities. It just seems like the perfect combination.”
Sip and Spin-A-Thon
Thanks to the generosity and support of Elevation Studios owner Michelle Maturo, Iannuzzi said, the SMS Research Foundation’s Spin-A-Thon will take place at the studio on Old Mill Road in West Redding for a fourth year.
This year’s event, however, won’t be like the last three.
“The other years we did a straightforward spin-a-thon — three hours of spinning from 9 to 12 on a Saturday or Sunday morning,” said Iannuzzi. “This year, I decided to change it up a bit [and] we turned it into an evening affair.”
At this year’s event, there will not only be spinning from 6 to 8 p.m., said Iannuzzi, but Pilates as well.
“Next door to Elevation is The Pilates Advantage,” said Iannuzzi. “Mary Beth Young, the owner, wanted to help out in some way so she donated some Pilates time.”
Not only has the event expanded to include Pilates, said Iannuzzi, but wine and food as well.
“We’re sort of turning it into a whole date night kind of thing — you come out, spin a little bit or do Pilates, and then socialize,” she said.
“It’s going to be a little bit more festive and give people a chance to socialize, which you can’t really do on a bike.” Mitch Ancona, owner of Ancona’s Wines & Liquors, is donating wines to sample, and Reed Collyer of Collyer Catering is going to donate the food.
“From 8 to 9:30, we’ll go into the back, learn about wine, enjoy some food, and learn more about the foundation,” said Iannuzzi, who is hoping that the event will “bring out a new group of people to get to know the foundation.”
Iannuzzi said she and the foundation have received “incredible” support from the Wilton community over the years.
“From the newspapers to the Village Luncheonette & Pizza leaving a little jar out for families to donate money,” she said, “the outpouring of support from the community is something I’ve always been so grateful for.”
To learn more, visit: smsresearchfoundation.org.