Horace Mann - Winter 2012 - (Page 20)

celebrating 125 years: preparing great and giving lives senior year. We were together through college and ever since, and married in 2004.” in the 20 years the Silvers have known each other, their communication has become seamless—a plus considering the joy and responsibility they experience with Jackson, and, now, a new focus of attention—Jackson’s baby sister Michaela, born on april 23, 2011. Jamie and alex also share longtime friendships with a close-knit group of HM alumni that has expanded to include college and friends from work. These friends are there for the Silvers today, offering encouragement and support, attending JGS foundation annual benefits and running on the organization’s behalf in the nyc Marathon, and other events. four HM alumni, including Jamie’s father edward Grossmann ’66, her brother richard Grossmann ’98, and the Silvers’ classmates Monique Morris Sock ’95 and Jared Stern ’95, are JGSf board members. fosterinG pioneerinG reseArch Today, Sydney is on her way to integrating the effects of SMS into the routine of a lively, delightful school girl. The Silvers have mastered Jackson’s daily bathing and bandaging routine, and conquered their fear of Jackson being bumped or hurt while interacting with other children. With their daily lives under as much control as possible, the iannuzzis and the Silvers finally had a chance to reflect. both looked beyond their own circumstances, to imagine the lives of parents similarly blindsided by their children’s health. both wanted to spare other families the torrent of questions and lack of responses they first experienced. and, for both, still larger questions loomed: is there a way to subvert SMS? Will there ever be a cure for eb? What these otherwise unrelated conditions share is a link to a missing protein. With regard to SMS, a lack of the protein rai-1, which is made or encoded by the missing piece of genetic material on chromosome 17, is believed to result in the features associated with the condition. Decades of eb research show that children with recessive Dystrophic eb (rDeb, a severe form) are missing the protein collagen vii, which binds the epidermis and dermis. Without this protein skin tears and separates from the body. With evidence pertaining to each condition already established one might expect researchers to be on their way to developing a means to loosen the grip. There is hope on the horizon, with dedicated medical investigators working on these conditions around the world. The difficulty lies in turning promising research into reality, as both families learned. SMS is present in one in 25,000 births. for eb, the figure is one in 50,000. because these conditions affect so few, obtaining the sydney iannuzzi with a family friend funding required for researchers to focus on just one disease, or generating enough public awareness to help circumvent obstacles to medical trials, hinders the hunt for solutions. With time of the essence, the two families embarked upon similar courses of action, at around the same time. in early 2010 each launched a foundation to pursue research on behalf of their children and others like them. The iannuzzis began with “Strength for Sydney.” The organization’s website provides information on SMS, and features Jennifer’s elegantly written blog, with personal reflections inspiring not only to those in the SMS community, but to all. Strength for Sydney is also the address for the SMS research foundation, which the iannuzzis initiated with another “SMS family.” its mission is to find “those missing answers” with “the belief that the prognosis of Smith-Magenis Syndrome can be redefined to enable every individual with SMS to experience an improved quality of life.” Through awareness and fundraising campaigns, including a 5K run and a spin-a-thon, Strength for Sydney raised $150,000 in less than a year—enough for its SMS research foundation to award a $50,000 grant to Dr. James r. lupski, a renowned human genetics expert at Texas’ baylor college of Medicine, whose laboratory has extensive experience with SMS. The foundation is helping finance his investigations of rai-1 functional pathway components, including some leading to therapeutic possibilities to intervene with or even reverse SMS’ symptoms. The foundation is also involved with a study of behavioral concerns related to children with SMS, directed at finding potential therapies. The Silvers brought The Jackson Gabriel Silver foundation into being, also in 2010, to fund viable research underway to treat and cure eb. in Jackson’s case, as with those with more severe forms of eb, the condition is life threatening, yet research suggest that a cure and livable therapy is within reach—with proper funding. The Silvers have raised over $700,000 since they began their efforts, and have awarded grants to researchers developing protein replacement therapies and stem and gene therapies at the University of Minnesota, Stanford University, and Kings college in 20 Horace mann magazine Winter 2012 photo © Ileana Garcia Jacolow

Table of Contents for the Digital Edition of Horace Mann - Winter 2012

Horace Mann - Winter 2012
Contents
Letters
Greetings from Dr. Tom Kelly
Greetings from Melissa Parento ’90
Horace Mann School’s 125th Anniversary Observances Begin
Strategic Thinking
New Initiatives in Institutional Research and Admissions
HM's New Director of College Counseling
Timothy HO and Monica Merlo are 2011 Tina and Dave Bellet Teaching Excellence Award Winners
Langfan Oratorical Contest, 2011
Horace Mann School Graduates 178 in June, 2011
Alumni Council Corner
Bookshelf
Class Notes
Memorials
Philanthropy and You

Horace Mann - Winter 2012