1 Welcome! On behalf of the Neuroblastoma Medulloblastoma Translational Research Consortium (NMTRC), DELL, and the organizing committee, I would like to welcome you all to the 2015 NMTRC Annual Symposium. We are thankful to DELL for supporting us this year for what will be a groundbreaking meeting. Once again we will be bringing together the experts in these diseases, including physicians, researchers and parent advocates who work together to accelerate the search for a cure. Our team will share our work uncovering the genomic differences and targets in children’s cancers, sharing our advances in sequencing and personalized medicine. This year we have combined this knowledge to target cancers at diagnosis for better response rates with the targeting of cancer stem cells to prevent children from relapsing. As a result, we will share our newest innovative protocol for children with neuroblastoma for treatment at diagnosis. We welcome Dan Munro, an expert on the interface between IT and healthcare from Forbes Magazine to help us in addressing the transition and incorporation of genomics into clinical care and insurance reimbursement to make this a reality for all patients in this year’s panel discussion. Thank you for joining with us in our commitment to finding cures for patients with Neuroblastoma and Medulloblastoma. Sincerely, Giselle Sholler, MD MSc. Haworth Family Endowed Director of the Innovative Therapeutics Clinic Head, Pediatric Oncology Translational Research Program Chair, Neuroblastoma and Medulloblastoma Translational Research Consortium (www.nmtrc.org) Helen DeVos Children's Hospital 2 Agenda MONDAY, MAY 4, 2015 HOTEL VALLEY HO BREAKOUT SESSIONS – HOTEL VALLEY HO 10:00am – 5:00pm PI Meetings – Tropicana Conference Room (Closed Session) 1:00pm – 5:00pm Site Coordinators Meeting – Dunes Conference Room (Closed Session) 1:00pm – 5:00pm Parent Advocates – Sands Conference Room 6:30pm NMTRC Symposium Dinner – Palm Court Lawn 3 Agenda TUESDAY, MAY 5, 2015 HOTEL VALLEY HO – SANDS 8:00 am Registration/Breakfast 8:45 am Welcome Giselle Sholler, MD Haworth Family Endowed Director of Innovative Therapeutics Clinic Pediatric Oncology, Helen DeVos Children’s Hospital Dennis Rosenthal Parent Advocate SESSION I MODERATED BY DON ESLIN, MD 9:00 am NMTRC Year Update Giselle Sholler, MD Haworth Family Endowed Director of Innovative Therapeutics Clinic Pediatric Oncology, Helen DeVos Children’s Hospital 9:15 am Phase I Tolcapone Study Concept Jessica Foley, MD and Maria Rich Pediatric Hematology/Oncology Helen DeVos Children’s Hospital 9:30 am DFMO Study Updates Giselle Sholler, MD and Deb Pankiewicz Haworth Family Endowed Director of Innovative Therapeutics Clinic Pediatric Oncology, Helen DeVos Children’s Hospital 10:15am Break 11:00 am Metronomic Therapy Nicolas Andre, MD Senior consultant, Pediatric Oncology AP-HM Région de Marseille, France 11:20 am Novartis Targeted Agents Deanna Mitchell, MD Pediatric Hematology/Oncology Helen DeVos Children’s Hospital 4 11:40 am Medulloblastoma Study with TB-403 Antibody Edwin Spaans PharmD, Clinical Pharmacologist TB-403 Program Leader Oncurious NV 12:00 pm Lunch: Catered by the Hotel Valley Ho SESSION II GENOMIC GUIDED THERAPY – MOVING INTO THE FUTURE MODERATED BY WILLIAM FERGUSON, MD 1:15 pm CAC2 – Pediatric Cancer Advocacy Movement Andy Mikulak and Kyle Matthews 1:30 pm Genomic Landscape of Pediatric Cancers Will Hendricks, PhD and Pilar Ramos, PhD Research Assistant Professors Integrated Cancer Genomics, TGen 1:50 pm Overview of New Upfront Neuroblastoma Study PLAN-T (Precision Laboratory Advanced Neuroblastoma Therapy) Giselle Sholler, MD Haworth Family Endowed Director of Innovative Therapeutics Clinic Pediatric Oncology, Helen DeVos Children’s Hospital 2:10 pm NMTRC Portal, Future of Communication William Burleson KIDS Cloud Program Manager, Translational Genomics Research Institute (TGen) Nehal Parikh, MD Division of Hematology/Oncology Connecticut Children's Medical Center 2:30 pm Dell’s Vision: Legacy of Good Wendy Wittington, MD, MMM Dell | Services 3:00 pm PANEL DISCUSSION: Moving Genomic Profiling to Clinical Care MODERATED BY DAN MUNRO Writer | Forbes Contributor | Author Panel: Jeffrey Trent, Ph.D. President and Research Director, TGen Professor of Genetic Basis of Human Disease Division Head of Melanoma Therapeutics Lab John Fox, MD AVP, Medical Affairs Executive Medical Director, Priority Health Wendy Whittington, MD Clinical Portfolio Leader at Dell, Dell Computers 5 4:00 pm Giselle Sholler, MD Haworth Endowed Director of Innovative Therapeutics Clinic Pediatric Oncology, Helen DeVos Children’s Hospital Head, Pediatric Oncology Translational Research Program, Neuroblastoma Laboratory, HDVCH Chair, Neuroblastoma and Medulloblastoma Translational Research Consortium (www.NMTRC.org) Jackie Kraveka, DO Pediatric Hematology & Oncology Medical Center of Medical University of South Carolina B. Melina Cimler, Ph.D. Senior Vice President – Regulatory & Quality Adaptive Biotechnologies Corporation Jerry Conway, VP VP of Payer Relations and Reimbursement Foundation Medicine TBD Baylor University, Texas Children’s Hospital Woody Thompson – Ronan Thompson Foundation Parent Advocate 6 The Neuroblastoma and Medulloblastoma Translational Research Consortium Symposium 2015 With special thanks to our sponsors who have helped make the symposium a success: Presenting Sponsor: The NMTRC would like to thank the Hotel Valley Ho and TGen for hosting the symposium this year. 7 The Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) is a group of 24 universities and children’s hospitals headquartered at Helen DeVos Children’s Hospital that offer a national and international network of childhood cancer clinical trials. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma. Participating NMTRC Sites William Ferguson, MD Cardinal Glennon Children's Medical Center Saint Louis University School of Medicine 1465 S. Grand Blvd. Saint Louis, MO 63104 Phone: (314) 577-5638 Email: fergusws@slu.edu William Roberts, MD Rady Children's Hospital San Diego UCSD School of Medicine 3020 Children's Way MC5035 San Diego, CA 92123-4282 Phone: (858) 966-5811 Email: wroberts@chsd.org 8 Don Eslin, MD Center for Children's Cancer and Blood Disorders Arnold Palmer Hospital for Children 92 West Miller St., MP318 Orlando, FL 32806 Phone: (321) 841-8588 Email: Don.Eslin@orlandohealth.com Jacqueline M. Kraveka, DO Medical University of South Carolina 135 Rutledge Avenue, Room 480 MSC 558 Charleston, SC 29425 Phone: (843) 792-2957 Email: kravekjm@musc.edu Javier Oesterheld, MD Levine Children's Hospital 1001 Blythe Blvd Charlotte, NC 28203 Phone: (704) 381-9900 Email: Javier.oesterheld@carolinashealthcare.org Giselle Sholler, MD and Deanna Mitchell, MD Helen DeVos Children's Hospital 100 Michigan NE Grand Rapids, MI 49503 Phone: (616) 391-2086 Email: Deanna.Mitchell@helendevoschildrens.org Email: Giselle.Sholler@helendevoschildrens.org 9 Nehal S. Parikh, MD Connecticut Children's Medical Center Division of Hematology/Oncology 2J 282 Washington Street Hartford, CT 06106 Phone: (860) 545-9630 Email: nparikh@connecticutchildrens.org Kathleen A. Neville, MD, M.S. Children's Mercy Hospitals Divisions of Pediatric Clinical Pharmacology and Pediatric Hematology/Oncology 2401 Gillham Road Kansas City, MO 64108 Phone: (816) 234-3059 Email: kaneville@cmh.edu Francis Eshun, MD Center for Cancer and Blood Disorders Phoenix Children's Hospital 1919 Thomas Road Phoenix, AZ 85016 Phone: (602) 933-0920 Email: feshun@phoenixchildrens.com Virginia Harrod, MD, PhD Pediatric Hematology Oncology Dell Children's Blood and Cancer Center 1301 Barbara Jordan Blvd, Ste 401 Austin, Texas 78723 Phone: (512) 628-1900 Email: VLHarrod@seton.org 10 Mark Fluchel, MD Primary Children's Hospital Division of Pediatric Hematology/Oncology 100 North Mario Capecchi Drive, 4th Floor Salt Lake City, UT 84113 Phone: (801) 662-4700 Email: markfluchel@imail.org Randy Wada, MD Hawaii Pacific Health Research Institute Kapiolani Medical Center for Women and Children Pediatric Hematology/Oncology 1319 Punahou Street Honolulu, Hawai‘i 96826 Phone: (808) 983-6000 Email: randalw@hawaii.edu Peter Zage, MD Texas Children’s Hospital – Baylor University 6621 Fannin Street Houston, Texas 77030 Phone: (832) 824-1000 Email: zage@bcm.edu Devang Pastakia, MD Vanderbilt University Assistant Professor of Pediatrics Division of Pediatric Hematology Oncology Monroe Carell Jr. Children’s Hospital at Vanderbilt 200 Pierce Avenue | 397 PRB Nashville, TN 37232-6310 Phone: (615) 936-1762 Email: devang.pastakia@vanderbilt.edu 11 Jawhar Rawwas, MD Children’s Hospital and Clinics of MN 2525 Chicago Ave. Minneapolis, MN 55404 Phone: (612) 813-5940 Email: Jawhar.Rawwas@childrensmn.org Valerie Brown, MD, Ph.D. Penn State Milton S. Hershey Medical Center and Children’s Hospital 500 University Dr. P.O. Box 850, MC H085 Hershey, PA 17033-0850 Phone: (717) 531-1042 Email: vbrown1@hmc.psu.edu Ted Laetsch, MD Children’s Medical Center 1935 Medical District Drive Dallas, Texas 75235 Phone: (214) 456-7000 Email: ted.laetsch@utsouthwestern.edu Gregory Hale, MD All Children’s Hospital 601 5th St S, Ste 302 St Petersburg, FL 33701 Phone: (727) 767-4176 Email: Gregory.Hale@allkids.org Raya Saab, MD American University of Beirut Medical Center AUBMC, DTS, 1st floor, John Kennedy Street, Beirut Phone: +961-1-350000 ext. 8108 Email: rs88@aub.edu.lb Nilay Shah, MD Nationwide Children’s Hospital 700 Children’s Dr. Columbus, OH 43205 Phone (614) 722-3550 Email: Nilay.Shah@nationwidechildrens.org 12 Lars Wagner, MD University of Kentucky HealthCare 2063 Norborne Dr. Lexington, KY 40502 Phone: 859-257-1000 Email: lars.wagner@uky.edu Jeffrey M. Trent, Ph.D. Translational Genomics Research Institute (TGen) 445 N 5th Street Phoenix, AZ 85004 Phone: (602) 343-8419 www.tgen.org Jeffrey P. Bond, Ph.D. University of Vermont Stafford Hall 95 Carrigan Drive Burlington, VT 05405 Phone: (802) 656-4608 Email: Jeffrey.Bond@uvm.edu André S. Bachmann, Ph.D. Professor and Associate Chair for Research Department of Pediatrics and Human Development College of Human Medicine Michigan State University Cook-DeVos Center for Health Sciences 301 Michigan Street, NE, Office 514 Grand Rapids, Michigan 49503, USA Phone: 616-331-5982 (office); 616-331-5858 (lab) Email: andre.bachmann@hc.msu.edu 13 NMTRC Parent Advisory Board: Kyle Matthews Because of Ezra becauseofezra.org Dawn Burgess SuperBub’s SuperHeroes www.superbub.org Andy Mikulak Max’s Ring of Fire Foundation www.maxsringoffire.org Mayank Gala Ishan Gala Foundation www.ishangala.org Patrick Lacey Beat NB www.beatnb.org Lisa Riniolo Melina’s White Lights www.MelinasWhiteLight.org 14 Sponsor Spotlight About Dell Dell Inc. (NASDAQ: DELL) listens to customers and delivers innovative technology and services that give them the power to do more. Dell’s Powering the Possible program is funded by the company’s pledge to contribute 1 percent of its pre-tax profits to learning, pediatric cancer, innovative social entrepreneurship and disaster relief initiatives that address unmet needs globally and enable human potential. Information about Dell Powering the Possible is available at www. dell.com/pediactriccancer. As the leading provider of healthcare IT services in the world, Dell helps healthcare organizations harness the power of information to simplify administration; coordinate and manage patient care; transition from episodic care to prevention and wellness management and ultimately to deliver personalized medicine. About TGen The Translational Genomics Research Institute (TGen) is a Phoenix, Arizona-based non-profit organization dedicated to conducting groundbreaking research for life changing results. Research at TGen is focused on helping patients with diseases such as cancer, neurological disorders and diabetes. TGen is on the cutting edge of translational research where investigators are able to unravel the genetic components of common and complex diseases. Working with collaborators in the scientific and medical communities, TGen believes it can make a substantial contribution to the efficiency and effectiveness of the translational process. TGen is affiliated with the Van Andel Research Institute in Grand Rapids, Michigan. For more information, visit: www.tgen.org. About NMTRC The Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) is a group of 24 universities and children’s hospitals headquartered at the Helen DeVos Children’s Hospital that offer a nationwide network of childhood cancer clinical trials. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma. 15 NMTRC Pediatric Cancer Heroes, Advocates, and Supporters….THANK YOU!!! The Swifty Foundation 16 Notes ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ 17 ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ ____________________________________________________________________ 18
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