Research, Resources, & Refreshments
Sunday, October 13, 2024
2:00 p.m. - 4:00 p.m. (Central Time)
Thanks to our presenting sponsor, Springworks, this is a free event
Biographies of Presenters:
Rene McNall-Knapp, MD
"The research landscape for plexiform neurofibromas"
Dr. Rene McNall-Knapp is a Professor in the Department of Pediatrics at the University of Oklahoma College of Medicine. She specializes in hematology/oncology.
Dr. Knapp did her residency in Pediatrics at Children’s Mercy Hospital and Truman Medical Center in Kansas City, Missouri. She completed her fellowship in Pediatric Hematology/Oncology at St. Jude Children’s Research Hospital and LeBonheaur Children’s Medical Center in Memphis, Tennessee.
David T. Miller, MD, PhD
“NF-1 Tumor Early Detection Study”
Dr. David Miller is an Associate Professor of Pediatrics at Harvard Medical School. He is Co-Director of the Multidisciplinary Neurofibromatosis Clinic and Director of the Neurofibromatosis Research Initiative (NFRI) at Boston Children’s Hospital. Through the NFRI, he created the international Genomics of MPNST Consortium, an effort to characterize the genomic architecture of this rare NF1-related tumor to facilitate more effective clinical management.
Dr. Miller has led or served on several national committees and advisory boards. He served as Chair of the American College of Medical Genetics Professional Practice and Guidelines Committee where he led the 2019 update of “Health Supervision for Children with Neurofibromatosis Type 1.”
Dr. Miller received his M.D. and Ph.D. from Washington University School of Medicine in St. Louis, completed a residency in Pediatrics at Yale-New Haven Hospital, and residency/fellowship in Clinical Genetics and Clinical Molecular Genetics at Harvard Medical School. He is board-certified in Clinical Genetics and Clinical Molecular Genetics.
See more information on how to participate in the NF-1 Tumor Early Detection Study below
Michele Sass
“Empowering students to perform on a level playing field”
Michele Sass believes that the success of obtaining testing accommodations and the overall academic success of a student is best achieved through a team approach between the school, the parents and the student. She began her educational advocacy career with her own daughter who has a severe vision impairment. Although her daughter was receiving some academic and testing accommodations, Michele knew there must be more resources available. She researched and identified additional academic and testing accommodations available and necessary for her daughter to perform to her highest potential (including Individual Education Programs and 504 plans).
Since then, Michele has channeled her passion and her skills in educational advocacy into a career to help other students with all types of learning disorders and disabilities. She has a proven track record of obtaining both academic and standardized testing accommodations for her clients. Furthermore, she has helped students gain a better understanding of how their disability affects their learning so they can develop the ability to fully advocate for themselves.
Mikaela Bradley, MGC, CGC
“Does a family history of NF1 influence the levels of stress and coping strategies of adults with NF1?”
Mikaela Bradley earned her Masters of Genetic Counseling at Vanderbilt University. She is a Certified Genetic Counselor currently working in Corewell Health’s cancer genetics department. She holds a bachelor’s degree in Biopsychology and Spanish from the University of Michigan.
Mikaela has a personal diagnosis of NF1 and has been involved in the NF community for several years through advocacy and research. She has served as a consumer reviewer for the Congressionally Directed Medical Research Program’s Neurofibromatosis Research Program to help determine funding for NF research projects.
Dr. Aditi Gupta
“Leveraging artificial intelligence for personalized risk assessment in NF1”
Dr. Aditi Gupta is an Assistant Professor of Biostatistics at the Institute for Informatics, Data Science & Biostatistics through the School of Medicine at Washington University in St. Louis. She is leading the NF1 AI-NLP precision medicine project at the University, a collaboration with Washington University’s NF Center.
More information on David T. Miller's NF-1 Tumor Early Detection Study
