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NSGC Digital Ambassador Program

Last year, NSGC launched a new program to connect a group of individuals in the genetics field who can work together to help raise awareness about the role of genetic counselors and promote their shared interest among their networks. This year, we continue the program with 15 influencers who have unique perspectives and knowledge in the fields of genetics and genetic counseling and asked them to become official ambassadors of the profession.

More information about this year’s class of Digital Ambassadors is below. Follow these social media influencers and the #NSGCGenePool hashtag on Twitter to contribute to the conversation on genetics and the genetic counseling profession.

NSGC Digital Ambassadors - Class of 2018
We will update this information as it’s available

Amy Byer Shainman
@BRCAresponder

 

Amy Byer Shainman, known as The BRCA Responder, is a passionate advocate for those with BRCA and other hereditary cancer syndromes; providing education, resources, and direct one to one support. In her advocacy efforts, Shainman emphasizes the importance of genetic counseling in the genetic testing equation. Shainman is the executive producer of the award-winning documentary Pink & Blue: Colors of Hereditary Cancer, the creator of #HereditaryCancerNews and the co-creator of #GenCSM - Genetic Cancer Social Media. Her BRCA/hereditary cancer memoir Resurrection Lily will be out at the end of 2017.

Bonnie Rochman
@brochman


Bonnie Rochman is an award-winning journalist who writes about the intersection of parenting, pediatrics and health. “The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids — And the Kids We Have” is her first book and was inspired by a cover story she wrote for Time magazine about sequencing children’s genomes. A former health and parenting columnist for Time, she has written for publications including The New York Times Magazine, The Wall Street Journal, Scientific American, and MIT Technology Review. She began her career in Jerusalem for The Boston Globe, writing about Arab-Israeli cooperation vis a vis car theft and ultra-Orthodox fashion models, and covering the death beat at The News & Observer in Raleigh, N.C., where she crafted feature obituaries of ordinary people who had died. She lives in Seattle, which serves as a base from which to explore the peaks of the Pacific Northwest with her husband and three children.

Brianne Kirkpatrick
@GCBrianne

Brianne is a licensed and certified genetic counselor, writer, and founder of Watershed DNA, a private practice specializing in ancestry testing and other direct-to-consumer tests. In addition, Brianne speaks to members of the media as NSGC’s Ancestry Expert. She is active in the world of genetic genealogy both personally and professionally and frequently speaks, writes, and blogs on the topic.

Christina Lizaso
@btrfly12

Christina is a community engagement professional who utilizes her background in nonprofit and volunteer management to empower patients and strengthen the patient voice. She is a CHEK2 previvor whose passion for this work has been driven by her own strong family history of cancer. Christina is the co-founder and co-moderator of the #gyncsm community for gynecologic cancer.

Dave Dubin
@AliveAndKicknDD

David Dubin is a three-time cancer survivor and patient with Lynch Syndrome. David is also the founder of AliveAndKickn, a patient-centered nonprofit organization dedicated to education, advocacy, and research of Lynch Syndrome and its associated cancers including colorectal, endometrial and others. In a professional capacity, he works as a Senior Director for the Sema4 Genomics, a Mount Sinai Venture. In this capacity, David is helping the institution to further its personalized medicine goals and objectives. David truly is AliveAndKickn.

Dee Sparacio
@womenofteal

Dee is an ovarian cancer survivor, research advocate and co-founder of the #gyncsm community for gynecologic cancer. Shortly after her initial diagnosis, Dee met with a genetic counselor to discuss testing. She was tested, and later took part in a precision medicine trial during which her tumor tissue underwent Next Generation Sequencing. She looks forward to highlighting the important role genetic counselors play in a cancer patient's healthcare.

Ellen Matloff
@ MyGeneCounsel

Ellen is a certified genetic counselor and the CEO of My Gene Counsel, a digital genetic counseling company that will launch a direct-to-consumer BRCA product in the summer of 2018. She served as the Founder and Director of the Yale Cancer Genetic Counseling Program for 18 years, was a plaintiff in the 2013 SCOTUS BRCA gene patent case and has authored dozens of publications on genetic counseling and testing. Ellen is a co-creator of #GenCSM - Genetic Cancer Social Media, which hosts popular twitter chats.  She is also the Forbes.com contributor on genetic counseling, testing and digital health.

Emily Fassi
@EmilyFassi

Emily is a genetic counselor currently working in clinical cancer genetics at in Boise, Idaho. She also works with Face2Gene on a project related to deep patient phenotyping. Emily has performed research surrounding a variety of rare genetic conditions, especially CHARGE syndrome. Emily believes that medical genetics has the ability to improve our lives and loves being a part of the genetic counselor community.

 

Jehannine Austin
@J9_Austin

 

Jehannine is a genetic counselor and researcher. Austin has a PhD in neuropsychiatric genetics and specializes in psychiatric disorders. She is fascinated by how genetic counseling can empower people by helping them to make personal meaning for themselves out of genetic information. Her research involves finding ways to improve that process. Austin is a Past President of the National Society of Genetic Counselors and NSGC’s Psychiatric Disorders Expert.

Kira Dineen
@DNAPodcast

Kira hosts a genetics radio show and podcast, DNA Today, where she interviews genetic counselors, patient advocates and other genetic experts. Her show was founded in 2012 and features over 80 episodes. She is the Communications Lead at My Gene Counsel, a digital genetic counseling company, and is in Sarah Lawrence's Genetic Counseling Class of 2020. 

Lisa Guzzardi
@LguzzardiM

Lisa is a patient advocate and curator of a private global journal club dedicated to providing the most up to date research and discussions for nearly 3,000 consumers at risk for hereditary cancers and renown clinicians. Her club includes everything and anything related to, but not limited to, genetics and genetic testing. By doing so, they have taken social media medicine to new heights.

Marleah Kruzel
@marleahdeank

Marleah Dean Kruzel, PhD is an Assistant Professor in Health Communication for the Department of Communication and a courtesy faculty for the College of Public Health at the University of South Florida. Dr. Dean Kruzel’s research focuses on utilizing patient-centered communication as a tool to enhance relationships between healthcare providers, patients, and their families and improve patient health outcomes. Her current research examines individuals who are highly predisposed to hereditary breast and ovarian cancer due to the genetic mutation BRCA but have not been diagnosed with cancer. A BRCA2-positive patient herself, Dr. Dean Kruzel volunteers for FORCE (Facing Our Risk of Cancer Empowered, Inc.), maintains a blog called “The Patient and the Professor,” and was featured in the CDC's "Bring Your Brave" breast cancer campaign.

Dr. Muin Khoury
@DrKhouryCDC

 

 

Dr. Khoury is the founding director of the CDC’s Office of Public Health Genomics. CDC’s Office of Public Health Genomics serves as the national focus for integrating genomics into public health research and programs for disease prevention and health promotion. Dr. Khoury has developed a number of successful ongoing national and international initiatives to translate advances in genomics and related technologies to recommendations and actions that improve health and prevent disease throughout the life stages. Since 2007, he has also served the National Cancer Institute as senior advisor in public health genomics in the Division of Cancer Control and Population Sciences. Between 2011 and 2015 he led the Epidemiology and Genomics Research Program in the same Division. Learn more about Muin here.

 

Rebekah Moore
@GeneticsRebekah

Rebekah is a certified and licensed genetic counselor who is passionate about empowering individuals at risk for hereditary cancer syndromes. She is an advocate for social media as an avenue for networking, outreach and education. Rebekah has practiced in northern Virginia and northeast Ohio, and is grateful for the opportunity to make a difference for patients in her hometown of Cleveland. 

Scott Weissman
@chicagogenetics

 

 

 

 

Scott is the founder of Chicago Genetic Consultants, LLC, a private genetic counseling practice offering genetic counseling and testing for adult onset disorders.  He also works as a genetic counselor within the Aurora Health Care system focusing on hereditary cancer syndromes.  His primary focus has been hereditary cancer syndromes but also worked with individuals who had hereditary cardiac disease, neurologic conditions as well as a multitude of other adult onset genetic conditions and the burgeoning area of pharmacogenomics. He also has experience with new genetic testing technologies and Next Generation Sequencing from his time with GeneDx, a clinical genetic testing company.  Scott had a faculty appointment as an Instructor of Clinical Medicine at the Feinberg School of Medicine at Northwestern University and is currently a Clinical Faculty member at the Northwestern University Graduate Program in Genetic Counseling. He has been an active member of the National Society of Genetic Counselors (NSGC) where he has worked on a variety of committees and held positions as the Co-Chair of the Familial Cancer Risk Special Interest Group and Liaison to both the Commission on Cancer and the National Accreditation Program of Breast Centers, two programs housed in the American College of Surgeons.