b'nificant part of what makes Bose tick. Shes a huge music fan,andsheandAndytry to catch the indie rock band Guided by Voices whenever theycometotown.The bandisledby65-year-old RobertPollard,belovedfor hisfamoushigh-legkicks he peppers throughout con-certs. My life goal is to be able to do those kicks when Bose and Betzers sons, Etash and Kiran.Im[RobertPollards]age. Its mainly the reason I work help other families. out, says Bose, an avid kickboxer.Rizzo mentored Bose as a junior in- The Betzer family has one annual vestigator on an NIH-funded programritual that sums up the generous core to research Zellweger Spectrum Disor- of the family. Every August 18, they Mount Saint Maryders (ZSD). She ended up contribut- pick up their order at Gigis Cupcakes Academy ing significantly to the understandingonSpringfieldAvenuetocelebrate of ZSD, says Rizzo. In one case, itIlansbirthday.Buttheydonttake was because she took a view of whatthose cupcakes home with them. In-happens to families and how they dealstead, they make an annual visit to the with this kind of a tragic, fatal disease Pediatric Intensive Care Unit at New-from the caretaker point of view. Mostark Beth Israel Medical Center. Thats of the research on these rare diseaseswhere Ilan passed away. He spent a lot obviouslyisfocusedonthepatientsof time there and we like to bring cup-symptoms. There are very few research projectsthathaveactuallylookedat the effect of these diseases [on the pa-tients family].WhileBoseinitiallyfocusedon ZSD research, her approach has been appliedelsewhere.Nowotherdis-eases are being looked at in a similar SISTERHOODCREATIVITYACCOMPLISHMENT fashion. Mousumi was early on doing Spark it! this, says Rizzo. She has contributed bothqualitativeandquantitativere-search, which is a tremendous advan-Open Housetage for understanding some of these diseases in ways weve never had in the Sunday, October 22, 2023 past.12:30 to 3:30 pm NowtenuredatMontclairState University,BoseisparticularlyproudMousumi and Andy with sons, Etash andAcademic, athletic, and extracurricular presentations ofherscientificpaperonZellwegerKiran, along with Mousumis sister andCampus tours from noon to 2 pmparents, who hold a photo of Ilan. Presentation from our Directress, S. Lisa D. Gambacorto, RSM, Ed.S., at 2:30 pm. SpectrumDisordertreatmentguide-To register visit our website or e-mail enrollment@mountsaintmary.org lines, which was published in 2016. In 2021, she published the Circle of Carecakes or lunch each year. We might do Student/Faculty Ratio- 8:1 The Class of 2023 received over Guidebook for Caregivers of Rare andsomething bigger when he turns 15, $23 million in grants/scholarshipsSerious Illnesses. And just this year, sheshe says. The family is committed to Students can choose from submittedtheVoiceofthePatientcelebrating Ilans life and making sure 13SPORTSand over 22AP Courses andreport to the FDA to facilitate patient- his memory remains alive in the family 50 extra-curricular Activities 29Honors Courses Offered focused drug development in a specificand in the community who knew and Mounties reside in Grade-Level Spiritual Retreats rare disease. The document was releasedloved him. 8counties and 80different 2 Kairos Retreats andto the public this year. Donny Levit is a writer and MaplewoodNew Jersey communities Our Annual Service Day In both her family and professionalresident. He is the author of Rock n Roll life,BosecanweaveherhumanismLies,10Stories.Checkouthisradio 1645 US Highway 22 W, Watchung, NJ 07069 with her sophisticated research analy- showsonInstagram:@undertheinflu-(908) 757-0108, ext. 4506www .mountsaintmary. org sis. Her sense of humor and generosityenceradio, @newishradio, and @kind-to her community and family is a sig- ofpoolradio.18/ matters magazine / fall 2023'