Get to Know Sickle Cell Disease:Talk with the Experts

April 21, 2015 at 6:00 PM

York College Faculty Dining Room94-20 Guy R. Brewer Boulevard

Jamaica, NY 11451

Presented by

York College Division of Student Development, ,

& the Queens Sickle Cell Advocacy Network

ProgramModerator - Dr. Scott 1~Miller

Welcome - Vincent Banrey, PhDInterim Dean of Student Development, York College

Greetings & Statement of PurposeGloria Rochester

Opening Remarks - Scott T. Miller, MD

Presentations from Panelists:

• Helene DePalma, MS, MT'(ASCP)SBB,CQA(ASQ)

• Cassandra Dobson, PhD, MS, RN-BC, PHc• Aaron Lloyd

• Stacey Sottile• Aniqa Rattu

Questions & Answers

Closing Rernarks - Jean Phelps, PhD

Dr. Scott Miller is a Professor of Clinical Pediatrics and Chiefof the Division of PediatricHematology/Oncology at SUNY DownstateMedical Center, and an attending physician atKings County- Hospital Center in Brooklyn"Since joining the Iaculty at Downstate in 1981,Dr. Miller has devoted much of his lime to both

clinical care and clinical research related to sickle cell disease.He has served as a local investigator for several multi-centerstudies, including the Cooperative Study of Sickle Cell Disease(CSSCD), the Stroke Prevention Trial in Sickle Cell Anemia(ST'OP), and the ongoing T\iViTCH, a trial to see if childrenat risk for first stroke because of an abnormal Dopplerscreening (TCD) might be safely switched from preventivetransfusion to hydroxyurea, and BABY HUG, a randomizedtrial of use of hydroxyurea in infants and young children withsickle cell disease. Dr. Miller has authored more than 100papers, most related to these cooperative trials or to sickle cell-related clinical research clone at Downstate. Focus has beenon stroke prevention and treatment, and use of bloodtransfusion and hydroxyurea to treat the various complicationsof the disorder. Dr. Miller was lead author of all oft citedpaper in the Neff' Englr7J1d./olimai oiMedicinc in 2000 fromthe CSSCD, which demonstrated the prognostic importanceof early clinical characteristics in predicting adverse outcomeslater in childhood, and was invited in 2011 to write an articlein the journal of the American Society of Hematology, Blood,entitled "How I Treat Acute Chest Syndrome". Dr. Miller isalso a respected clinician, listed in the Be's! DOC/OlS in the

Neff' York Metro Region, as compiled by Cas tle-Connolly,since 2000, and Best Doctors in America since 2007. He wasawarded the State University of New York's Chancellor Awardfor Scholarship and Creative activitv III 2012.

Dr. Miller grew Lip near Cleveland, Ohio, andgraduated summa cum laude with a degree ill chemistry lromKenyon College in Cambicr Ohio. He completed medicalschool at the Albert Einstein College of Medicine, a pediatricresidency at Moruefiore Hospital and a Iellowship in PediatricHematology/Oncology at the Cornell Medical Center/Memorial Sloan Kettering Cancer Center. Shortly alterarriving at Downstate he married Christina Miller (nee Seelig);Christina is a librarian at York College and is just beginningher career as a sickle cell advocate, working with Dr. JeanPhelps and with Gloria Rochester of the Queens Sickle Cell,Advocacy Network to plan today's event.

Research and clinic come together with hydroxyurea, achemotherapeutic agent that attenuates the clinical course ofsickle cell disease. Many of the above projects look atconfirming safety and efficacy in children, and trying to expandits role in treating serious sickle cell problems. The clinic iswhere, every day, the enormous benefits of hydroxyureatreatment on the lives of children and adolescents cared for atDownstate and Kings County are seen. Dr. Miller has been CUlenthusiastic prescriber of hydroxyurea since the late 1990'sand will talk about the treatment today. You call read moreabout sickle cell disease, hydroxyurea and the many otherdedicated care providers at. Downstate atwww.sicklecelldownstate.org or join us on Facebook at SickleCell Downstate.

Gloria Rochester is the founder and CEO of Queens Sickle CellAdvocacy Network (QSCA1'\'). QSCAN is a 110n-for-profit broad based community organization,servicing children and Iamilies with special needs.Established in 1989 as the Queens Sickle Cell

Community Network, It subsequently became incorporated in 1997and changed its name to the Queens Sickle Cell Advocacy Network,Inc. (QSCAi\T). Its mission and vision are a deep sense ofcommitment; it focuses on those with Sickle Cell conditions.QSCAN provides a clear sense of direction lor families andindividuals, enabling them to participate actively in theircommunities ami health care needs. QSCAN is located at 207-08Hollis Ave, Queens Village, New York.

Cassandra E. Dobson, PhD, MS, BS, RN-BC,PH(c) believes ill the delivery of optimumpatient care. She is an efficient nurse who alwaysgoes above and beyond Lo meet the needs of thepatients. Dr. Dobson's vision for the future is to

educate and empower patients to seek appropriate health carein a timely manner. She is an advocate [or the promotion ofsell-ruanagernent for the individuals with sickle cell disease.Or. Dobson has worked in several different positions duringher nursing career, from LPN, staff nurse, Senior ClinicalPreceptor, Clinical Instructor, Home Care Nurse, ClinicalCare Coordinator, Administrative Nurse Manager, AssistantDirector of N ursing, Quality Management Analyst in Researchand adjunct professor. Currently her posit ion is an AssistantProfessor at Lehman College, Bronx N. Y.; she also works ona Per-diem basis as an Administrative Nurse Manager atMontefiore Medical Center, Bronx, N. Y. Dr. Dobson hascurrently completed a post doctorate in Epidemiology andPublic Health, at Albert Einstein College or Medicine atYeshiva I niversity in Mayor 2010. Dr. Dobson received adiploma in nursing from Flushing Hospital School of Nursing,Queens N.Y. She later returned back to college in 1088-1990to receive her BS in nursing Irorn Lehman College and stayedat Lehman to earn her MS III maternal childnursing/education in 1992. In 2006 she completed a doctoraldegree in nursing/research at Columbia University, New YorkCity. Dr. Dobson is very active in several community,organizations, where she sits on the Board of Directors (orCoalition for Concern Medical Professionals (CCMP) .sinc« ,1998 and Queens Sickle Cell Advocacy Network (QSCAN),since 2006-2009. She continues to serve as a nurse consultantfor persons with sickle cell disease in the tri State area andnationallv.

Helene DePalma is an associate professor in York College'sClinical Laboratory Sciences Program in theDepartment of Health Professions. Prior tojoining the faculty at York, she held the positionof Director of Operations at New York Blood

Center's Laboratory of Immunohematology and Genomics.Her professional experience includes over 2.') years oflaboratory management ill various hospital and blood centerclinical laboratories. Professor Def'alma's expertise andresearch interests include laboratory management, qualityassurance and transfusion medicine.

Dr. Dobson has received acknowledgements for her work withsickle cell disease from various organizations. She has alsoreceived a financial scholarship from Columbia University inorder to complete her dissertation on "Guided Imagery forPain Management by Children with Sickle Cell Disease Ages Gto 11". Dr. Dobson has published and co-authored articles onSickle cell disease and other life threatening diseases. Dr.Dobson hopes to continue to touch the lives of children andfamilies who suffer with sickle cell disease and other chronicdiseases though research and public health programs. As apatient with sickle cell disease (HI> SS disease) and a nurse,Dr. Dobson's goal is to continue touch the lives of' childrenand families who suffer with sickle cell disease and otherchronic diseases though education, research and public health

Aaron lloyd is a freelance writer, scrccnwrircr, and filmmaker. He

has written about hip-hop music lor over twentyyears, including Len Eye and T-Boz or TLC and ATribe Called Quest. I Iis articles have appeared inRap Pages, Vibc.com, and other media outlets.Aaron was a louuding and executive board member

of Black NIA F.O.R.C.E, a community and cultural organization,and co-owner or the writing' service company Scribble ScrabbleEntertainment. Aaron was a production assistant on Paula Abdul'sdance show, Live To Dance, and the Braxton family reality show,

The Braxton ~".He is also a contributing author of the criticallyacclaimed anthology Be A Father to your Child: Real Tsik fromJ31;lcK Ill/en 011 F:um~y, Love, and Fstherhood.

Lloyd is currently writing, producing and directing his firstfeature film, a GO-minute documentary on sickle cell disease titled,SiCldc'l: Lloyd maintains a sickle cell disease blog Crisis Of/e); atwww.ctisisover.ner. The blog covers the information and progress of

the documentary, as well as its main purpose, posts regarding thecomplexities or living with sickle disease. Aaron lives OIl Long'island in Freeport, NY wile his wife, educator Michelle Lloyd forthe past 15 years.

programs.

I.

Aniqa Rattu IS a senior majoring III Clinical LaboratoryScience and minoring in Psychology. Currently,she is doing a laboratory internship at FlushingHospital. She is the founder and formerpresident of the Clinical Laboratory Science

Club at York College. She is also a member of National 'Society or Leadership and Success and YorkCollege's Environmental Committee. She' willdiscuss common hematology tests to detect sickle cell anemiasuch as Hemoglobin S solubility test, electrophoresis and highperformance liquid chromatography.

Stacey Sottile-A journalist, spoken word artist, author,publisher, and advocate, Stacey is proud of the work shecreates and she looks forward to releasing new material.Diagnosed with sickle cell disease (a blood disorder that callbe fatal) at eleven-months-old, when the doctors told her shewouldn't live to see her twenties, Stacey didn't becomehopeless, but instead she chose to live a full & vibrant life. "Iowe it all to God," she says, discussing her faith.

Born anci raised in Corona, Queens, this busy wife andmother of two boys began performing spoken word in NewYork City venues in the late 90's. Stacey took her love forwriting on to the next level by studying and graduating with aBachelor's degree in Creative Journalism from BernardBaruch College. While at Baruch she started a student'swriting club, and was a scholar of the renowned SidneyHarmon Writer-In-Residence honors program. Currently aspokesperson for the New York Blood Center (i\TY8C),Stacey writes speeches and appears on Television, Radio &Print promotions. Her sickle cell advocacy volunteerismallows her to bring a campaign to encourage blood donationsto audiences across the New York area.

Speaking before the Mayor Michael Bloomberg\dministration, meeting at City HcLlI with the staff of CityCouncil Speaker Christine Quinn, and writing a speech whichwords were a part of a Public Service Announccment lor theNYBC and was displayed at the New York Time SquareToshiba's gigantic Vision Screen - are a IC", of Sottile's recentachievements in her role as an activist.

Stacey's personal story and comments have been featuredin Essence, and Ebony magazines. She has published cuticles,which have appeared in The Source Hip-Hop magazine andother journals. Her television broadcast appearancesinclude NY1 news, Fox5 New York "Street Talk"program, Fox5 and PIX11 news stations. Between defeatingsickle cell disease (SCD), most of her time is spent working OIlSCD related causes, taking care of her kids, and developingnew creative projects,

The York Colleg Division of Stud 'Ill Developmentextends its gratitud ' to th ' Queens Sickle CellAclvorac I .twork, all of the panelists, and

participants who hav made this event a success.

A v .ry special thank you to:

Christine Miller

Professor john Craflco

Professor Tonya Shearin-Patterson

Ashl 'y (Jill

Marlcnis Alvidrez

Stephen Galley

Kadesha Smith

Limor Allaeb

'YORK CollegeDivision of Student Development

oSCAN t~~~J.!DQ!leens Sic{fe Cere)J.4flocacy J{etwort Inc.

New ty"or{CMpter of tlie National SCDJlJl