For loved ones of those with special needs, day-to-day life can resemble a roller-coaster, or more aptly, an endless bike ride. There are hills and valleys, blow-outs and breakdowns, and sometimes you just want to say, “stop the ride, I want to get off.” Such “up and down” behavior is a hallmark of Smith-Magenis Syndrome (SMS), a rare chromosomal disorder that occurs in roughly 1 in 25,000 live births. The rarity of this syndrome, which is characterized by specific behavioral, physical and developmental features, means that not many research dollars are funneled its way.
Wilton’s Jennifer Iannuzzi is working to change that.
“I had never even heard of SMS before my daughter, Sydney’s diagnosis. In fact, the doctor who gave us the diagnosis had never even heard of it! Her advice to us was to ‘Google it.’ If I–and others with loved ones with SMS–don’t raise awareness about it, who will?”
On Sunday, Nov. 10, 50 men and women each spent an hour on spin bikes at Elevation Studios in Georgetown, at the “Second Strength for Sydney Spin-a-Thon,” which Iannuzzi organized. Each participant raised money and sweat equity to help increase awareness and funds for SMS.
While most would consider a spin-a-thon the culmination of fundraising efforts, for Iannuzzi, it was just a warm-up. She will trade in her cycling shoes for sneakers for the Philadelphia Marathon in just five days–Sunday, Nov. 17, which happens to be SMS Awareness Day.
Combined with Iannuzzi’s fundraising efforts for the upcoming marathon, she has raised nearly $40,000–$4,000 from the spin-a-thon alone.
Because of Sydney, now 7-years-old, Iannuzzi is literally tireless when it comes to SMS. She is co-founder and vice president of the SMS Research Foundation (her husband, Chris, is also active on the Foundation’s Board), which recently presented a check for $100,000 to the Baylor College of Medicine, which will establish a new center focused on expanding research into this complex genomic disorder. According to the Foundation’s website, “The center will be named the SMS Initiative sponsored by the SMS Research Foundation at BCM. The Foundation will contribute $300,000 over five years to establish a fellowship and research program.”
Sunday’s Spin-a-thon also featured a Health & Wellness Expo, featuring local vendors and experts who shared their insights with the participants and visitors. Loryn Galardi, M.S. offered visuals and advice about nutrition; Susi Laura Massage Therapy gave some much-needed post-spin massages; Hello Yoga demonstrated stretching poses to help heal sore muscles; and Janet Shroeder shared her extensive knowledge about integrated pain and stress relief.
Raffle items were donated by Jade, Lululemon, Southern Yankee, Renaissance Beauty, Barbarajean Seagal, The Cutting Board, Barbara Melamed, and Frank Gilroy.
“I can’t say enough about the support and encouragement I’ve received from the community,” Iannuzzi said, “From the donated space and instruction from Elevation Studios, to the fabulous raffle items and vendors who donated their time, this event wouldn’t have been possible without them.”
To donate to the Run for Research, visit http://runforresearch.kintera.org/faf/home/default.asp?ievent=1083542.
The SMS Research Foundation is the only organization established to fund research of Smith-Magenis Syndrome on order to improve the quality of life of those with SMS and their families. To donate and for more information, visit http://www.smsresearchfoundation.org.
For more information (and a glimpse into daily life with SMS), visit Iannuzzi’s site at http://strengthforsydney.org/.