Singing With Marni to Support SMS

Singing With Marni to Support SMS

Smith-Magenis Syndrome (or “SMS”) is a rare and complex genetic disorder. It is referred to as a microdeletion disorder, as a small part of chromosome 17 is missing or not functioning properly. For those with SMS, one copy of a specific gene protein (RAI1) is missing. The brain is a key tissue that requires proper RAI1 levels for growth and development. The lack of this specific protein leads to significant clinical and behavioral issues – self-injury, aggression, impulsivity, emotional dysregulation, obesity, sleep disturbances, and cognitive impairment. Unfortunately, this constellation of features makes it extremely challenging for individuals with SMS to become fully independent and they typically require a lifetime of interventions and supportive care. Despite these challenges, individuals with SMS are equipped with wonderful attributes that outweigh all of their challenges.

Marni Tanenbaum is a very sweet 7-year-old girl from Manalapan, New Jersey, who was diagnosed with SMS in 2021. Through the love and support of her family, friends, teachers, caregivers, and community, she has a support structure in place to help her get through her daily struggles. Despite these challenges – like all SMSers – Marni has an endearing personality, is affectionate, loves to give hugs, has an excellent memory and infectious sense of humor, and most of all…. she loves to be the center of attention. It’s for this reason that Marni will be singing both the National Anthem and “Take Me Out to the Ballgame” at an upcoming Minor League Baseball game! Marni’s extremely patient and supportive brother Logan Tanenbaum, who is an avid Manalapan Braves travel baseball player, will also have the honor of throwing out the first pitch!

Please join us on Sunday, June 2, 2024, as the Jersey Shore Blueclaws take on Brooklyn at 1:05 pm. We will support Marni and Logan, enjoy a fun day of baseball, raise money for a good cause, and we can even bring our dogs as they’re welcome in the park on Sundays! The Blueclaws have graciously agreed to donate a portion of tickets sales under our block to support the SMS Research Foundation. The SMS Research Foundation is dedicated to finding unique and innovative ways to improve the lives of individuals with Smith-Magenis Syndrome.

Please consider spreading the message and/or making an additional donation to the SMS Research Foundation to help children with SMS like Marni!