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WIB-Southern California: Rare Disease Part VI: Can We End the Diagnostic Odyssey?
February 20 @ 5:30 PM - 8:30 PM PST
According to Representative Scott Peters, “[i]t’s hard enough for parents and families to face an unknown medical future for a young child and they should have access to every available diagnostic tool. Whole genome sequencing will allow doctors to better target treatments and improve children’s lives.”
Come hear from Representative Scott Peters’ office, listen to individuals from industry, a physician, and a patient/family to get their perspective. Let’s try to answer the question; “Can we end the diagnostic odyssey?”
Note: Food will be provided.
5:30 p.m – 6:30 p.m. Registration and Networking
6:30 p.m – 7:45 p.m Panel Discussion + Q&A
7:45 p.m – 8:00 p.m Networking
Dawn Barry (Moderator) – Dawn Barry is President & Co-founder of Public Benefit Corporation, LunaPBC. LunaPBC, a World Economic Forum 2019 Technology Pioneer, launched LunaDNA, an SEC-qualified health data-sharing platform owned by its members. LunaDNA is the first genomic and medical research database owned by its community. Luna DNA enables people to control and share their genomic and health information for the greater good of the community and medical research. Dawn spent 12 years at Illumina and served as Vice President, Applied Genomics, was San Diego Business Journal’s 2017 Business Woman of the Year, a TEDxSanDiego 2016 speaker, and is Board Chair of the Alzheimer’s Association San Diego/Imperial County.
Anthony Nguyen, MA, MHA (panelist) – Anthony currently serves as the District Director for U.S. Congressman Scott Peters (CA-52) and has worked in both his San Diego and Washington DC offices handling issues on health care, seniors, housing, labor, human trafficking, national security, and Asia-Pacific affairs. Anthony previously worked for the U.S. Social Security Administration and started his career in public service interning for the U.S. Department of State – Office of the U.S. Global AIDS Coordinator. He is a former Board Member for the Palomar Health Foundation, LEAD Impact San Diego c/o 2018 graduate, and Political Partner of the Truman National Security Project – San Diego Chapter. He received his BA in Political Science from San Diego State University, a Master of Arts in International Relations from the University of San Diego, and a Master of Health Administration from the University of Southern California. Anthony is a proud 1.5 generation Vietnamese American, born in Taiwan, and fluent in Vietnamese.
Erica Ramos, MS, CGC (panelist) – Erica is a genetic counselor who focuses on the development and implementation of clinical programs and products to accelerate the responsible adoption and integration of genomics into preventive care and population health. Erica was the 2018 President of the National Society of Genetic Counselors, the leading professional organization for genetic counselors more than 4,000 members strong, and most recently, the Head of Clinical & Product Development for Geisinger National Precision Health, a unit of Geisinger Health System in central Pennsylvania. There, her team focused on building innovative, efficient, and scalable approaches to genetic counseling, testing, and education – critical components to leveraging genomics throughout a person’s lifespan. Prior to joining Geisinger, Erica was an Associate Director of Market Development at Illumina for Precision Health & Screening.
Erica earned her master’s degree in Genetic Counseling from the University of California-Irvine. She is certified by the American Board of Genetic Counseling and a licensed genetic counselor in the State of California.
Dr. Razelle Kurzrock (panelist) – Dr. Kurzrock is the Distinguished Professor of Medicine, Assoc. Director, Clinical Science, Director, Center for Personalized Cancer Therapy, Leader, Experimental Therapeutics, Director, Rare Tumor Clinic at University of California, San Diego, Moores Cancer Center.
Dr. Razelle Kurzrock is known for developing the largest Phase 1 clinical trials department in the nation/world while at the University of Texas M.D. Anderson Cancer Center. A central theme of that program was the personalized medicine strategy, embodied in a protocol called PREDICT for Profile-related Evidence Determining Individualized Cancer Therapy. This approach utilized advanced molecular technologies to match patients with targeted cancer treatment that is more likely to work for their individual tumors.
At Moores Cancer Center, Dr. Kurzrock’s charge is broad, including not just growing and innovating the center’s clinical trials program, but also heading its newly established Center for Personalized Cancer Therapy. This center focuses on precision medicine trials, using the most innovative genomically-targeted drugs and/or agents that arm the immune system. This program is a global leader in precision medicine, bringing the first personalized transcriptomic study to the clinic in an international setting spanning five countries (WINTHER), as well as the first study of individually customized combination therapy (IPREDICT) (both Nature Medicine, April 2019). As a physician-scientist, Dr. Kurzrock brings extraordinary expertise and experience in clinical research, business operations, regulatory operations, financial and budget planning, and administrative oversight, in addition to her world-recognized work in translational science. Dr. Kurzrock received her MD degree from the University of Toronto and has over 750 peer-reviewed publications, and a uniquely strong record of competitive grant funding within the setting of Phase I program building.
Dr. Kurzrock also has a strong history of building outstanding education/training programs. At University of Texas MD Anderson Cancer Center, she founded and directed the MS/Ph.D. program (degree-granting) in Human Biology and Patient-Based Research, as well as the Fellowship in Investigational Cancer Therapeutics. At UCSD Moores Cancer, she founded and directs the Fellowship in Personalized Cancer Therapy.
Dr. Kurzrock has four children and three dogs and lives with her husband, Dr. Philip Cohen, a dermatologist, in San Diego, CA.
Gay Grossman – Gay is co-founder of ADCY5.org foundation. She has been active in the Rare Disease community for over two decades and continues her efforts to build and support patient and family advocacy. ADCY5.org supports ADCY5-related dyskinesia and world-renowned researchers who study the gene and its variant. She continues to build a community of hundreds with this disease when they started with only 1. She is an advocate of shared data and patients owning their data. Her focus remains to help all Rare Disease patients.
Together with her daughter Lilly, she co-authored a children’s Rare Disease book, We Are All Rare, providing a Rare Disease learning tool for elementary school-aged children.
Gay successfully advocates in a variety of environments including, but not limited to, educational classrooms, private, state, and federal insurance, as well as collaborating in the Rare Disease space to gain access to clinical trials and medical therapies. Gay is now Director of Patient Engagement at Neurogene Inc.
- Members: $15
- Non-Members/Free Unlimited Guest Members*: $45
*To access the Member rate, click here to purchase a WIB membership.
Special Guest Pricing
Members can register guests at member price.
* – Walk-ins will be accepted until event capacity is reached.