Bringing congenital cytomegalovirus (CMV) to the forefront of the conversation. Highlighting advocacy, education, industry, and scientific advances in the space.
Alyson Ward is a senior researcher at Utah State University and the Director of Quality Improvement at the National Center for Hearing Assessment and Management. Ms. Ward has a master's in public health, is a certified IHI Quality Improvement (QI) Advisor and is currently seeking her PhD in Psychology. For the past 20 years, her career efforts have demonstrated commitment to improving public health through education, research, policy development, evaluation, and grant development from the community to national levels. Ms. Ward's positions and interests provide her with broad and valuable experiences in public health. She has been the lead on several large projects and contracts such as evaluating state grants, conducting state and national needs assessments, serving as a QI advisor for outside organizations, and serving as the Co-director for the CMV Public Health and Policy Conference. Ms. Ward currently serves on multiple advisory committees including the Family Leadership in Language and Learning, the Catalyst Center, and Genetic Alliance. She has presented at multiple national and international conferences and published articles and book chapters on issues related to children who are deaf or hard of hearing, including CMV. Ms. Ward is currently working on an E-book chapter with Dr. Karen Fowler on CMV and considerations for Early Hearing Detection and Intervention programs.
Join the National CMV Team as they speak with CMV parent, Tami Hoffman, LMSW, during Late Onset Hearing Loss (LOHL) Awareness Week. Tami is the proud mother of Ryder, who was diagnosed with LOHL. Listen in as she shares her family's journey through LOHL.
The National CMV Team had the privilege of speaking with Kenya Simmons, a dedicated intern with the Foundation. Kenya Simmons is a Master's in Public Health graduate student with a concentration in Infectious Disease Epidemiology at Florida International University. She began her internship journey with the National CMV Foundation in August of 2021. Her interest in infectious disease, health education, and health equity is what led her on this path with the Foundation. Upon completing her internship, she hopes to continue her journey in Maternal and Child Health focusing on providing infectious disease health education to mothers, children, and families.
Dr. Jenks and Khaliah chat with Dr. Megan Pesch, President-Elect of the National CMV Foundation during Developmental Disabilities Awareness Month. Dr. Pesch is an Assistant Professor of Developmental and Behavioral Pediatrics at the University of Michigan where she is the Director of the Congenital CMV Developmental Follow-up Clinic. Tune in to learn more about how CMV can cause developmental disabilities, navigating care after a developmental disability diagnosis, and how the Foundation is working to increase awareness of developmental disabilities.
Learn more about one of the National CMV Foundation's partnering organizations, PUSH for Empowered Pregnancy, in this episode featuring Samantha Banerjee. Samantha is the Executive Director of PUSH for Empowered Pregnancy, an action-oriented nonprofit founded by bereaved families and dedicated solely to eradicating preventable stillbirth in the US. Since her daughter's cord accident just two days before the due date of her otherwise blissful first pregnancy, Samantha has been devoted to educating expectant parents about stillbirth risk and changing the way prenatal medicine is practiced so that no other parent is left with the devastating “what-ifs” that torture so many stillbirth families. Through grassroots awareness-raising and strategic, top-down medical reform, PUSH is taking big, bold action on a national scale to ensure that more parents and babies make it home safe together. Learn more at pushpregnancy.org
Lisa Eickel is a Speech-Language Pathologist who has spent most of her professional career working with birth to elementary school-aged children. Her professional passions include working with early communicators, children who are non-verbal, and those that use Augmentative and Alternative Communication (AAC) to communicate. She has served as the CMV Community Alliance Chair for Virginia with the National CMV Foundation for two years. Lisa is a mom to three feisty and fun little boys (1, 4, and 6 years old). Her four-year-old son, Owen, was born with congenital CMV in 2017. Lisa lives in Ashburn, Virginia with her husband of 9 years and can be found cheering on the James Madison University Dukes, enjoying Virginia's wineries, or trying to find some serenity with a good book when she isn't wrangling her tribe of boys.
In this episode, Khaliah chats with Richard Hughes IV, JD, MPH, who is Vice President of Public Policy at Moderna. He is a nationally recognized vaccine thought leader and has led many efforts to expand access to vaccines and preventive services and improve public health outcomes. Previously, Richard was managing director at Avalere Health, where he founded and led the firm's vaccines group. Prior to joining Avalere, Hughes practiced healthcare law and served as a strategic advisor at Epstein, Becker and Green. He previously held roles with Merck and the Association of State and Territorial Health Officials, and as a gubernatorial appointee to the Arkansas State Board of Health. Hughes previously held an academic faculty appointment as a professorial lecturer in health policy and management at the George Washington University's Milken Institute School of Public Health. He earned his JD from the George Washington University Law School and MPH from the University of Arkansas for Medical Sciences.
In this episode of CMV Speaks, we chat with Ilene Penn Miller, J.D., who serves as the Director for the Rare Epilepsy Network (REN) – comprised of 65+ rare epilepsy organizations committed to improving outcomes for patients through collaborative research. Also, she is the Epilepsy Leadership Council Advocacy Co-Chair on the 2020 NINDS Curing the Epilepsies Conference. Ilene is a former Advisor on the NIH National Institute for Neurological Disorders and Stroke (NINDS) Advisory Council (2013-2017). Previously, Ilene co-founded and is past President of Hope for Hypothalamic Hamartomas (hopeforhh.org). She has recently published the Rare Epilepsy Landscape Analysis (RELA) and an editorial in Epilepsy & Behavior - Raring For Change.
Along with Cody Stevens of PMG Awareness, Khaliah sits down with Tammy Boyd, JD, MPH, for this month's podcast episode; highlighting the launch of the Rare Disease Diversity Coalition, just in time for Rare Disease Day. Tammy Boyd is the Director of Health Policy and Legislative Affairs at the Black Women’s Health Imperative in Washington, D.C. Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.
In this episode, we sit down with Sharon Wood, Senior Project Manager at CMV Action. We chat about how they've changed their programming in response to the COVID-19 pandemic, what they're planning for 2021, and much more. Enjoy!
In this episode, we speak to Kayla Keenan, Executive Director of the Canadian CMV Foundation. Years of volunteering with community organizations led her to pursue a career in non-profit management. Today, she is privileged to work alongside a team of incredibly passionate and dedicated volunteers who are committed to eradicating congenital CMV infections. Originally from New Brunswick and a true East-Coaster at heart, she currently lives in Saskatchewan with her husband and their two dogs.We learn about the history of CMV Canada, the focal points of the organization, what they're doing to handle programming and activities in light of COVID-19, and maybe just a little bit about poutine. Enjoy!
In this episode, we sit down with Khaliah Fleming, MPH, MCHES, and executive director at the National CMV Foundation, and Amanda Devereaux, RN, BSN, and Program Director at the National CMV Foundation. We discuss their roles in the organization, their work in the CMV space, and speak on equity and disparities in the maternal health space. Enjoy!
In this episode, Khaliah and Shayne chat with Dr. Sallie Permar, National CMV Foundation Board Director, Professor of Pediatrics at Duke University, a member of the Duke Human Vaccine Institute, an affiliate of the Duke Global Health Institute, and Associate Dean of Physician-Scientist Development at Duke University Medical School. We speak about her CMV research, how COVID-19 has affected it, why attention should still be placed on CMV, and much more. Enjoy!
In this episode, Khaliah and Shayne chat with Lori Panther, MD, MPH, and Director of Clinical Development, Infectious Diseases at Moderna based in Cambridge MA. We discuss where Moderna is at in their CMV vaccine quest, why a vaccine is critical, clear up some common myths around vaccination, and much more. Enjoy!
In this episode, Khaliah and Shayne sit down with CMV Dads Nic and Andy to discuss their CMV journeys so far, what they're doing to raise CMV awareness in their communities and abroad, what needs to change for CMV education, and much more! We hope you enjoy the episode, and please remember to subscribe, review, and rate the podcast.
A conversation with Dr. Sallie Permar, National CMV Foundation Board Director, Professor of Pediatrics at Duke University, member of the Duke Human Vaccine Institute, an affiliate of the Duke Global Health Institute, and Associate Dean of Physician-Scientist Development at Duke University Medical School.Dr. Permar is a physician scientist focusing on the prevention and treatment of neonatal viral infections. She leads a research laboratory at Duke investigating immune protection against vertical transmission of neonatal viral pathogens, namely HIV and cytomegalovirus (CMV), using human cohorts and nonhuman primate models.
A conversation with Dr. Megan Pesch, National CMV Foundation Board Member, developmental and behavioral pediatrician at CS Mott Children's Hospital in Ann Arbor, MI, and mom to three daughters, her youngest born with congenital CMV. We are grateful for her collaboration and unique perspective!
Step into the shoes of three CMV Dads: Brandon, Matt and Shayne to learn about their lives as CMV parents, their amazing CMV kiddos, their success raising CMV awareness and their future goals to help STOPCMV.
Guest host, Becky Ericson, founder of UpLevel Consulting, LLC., speaks with Nick Capanear, EVP, Executive Creative Director, GSW NY and Kristen Hutchinson Spytek, President & CEO, National CMV Foundation about how the new CMVIRUS campaign came to life, including a behind the scenes look at the collaboration process, aims, and goals for National CMV's new public health campaign. Check out cmvirus.org and take action today!
A conversation with Kathleen M. Muldoon, PhD., Associate Professor, College of Graduate Studies, Midwestern University and Seth D. Dobson, PhD., Principal, Artful Analytics LLC.Kathleen and Seth are parents to son, Gideon, born with congenital CMV. We chat about their CMV journey, Kathleen's 2017 study, and their ongoing work as CMV activists.Show Notes:Follow Kathleen @ProfMuldoon and Seth @sethdobsonReview Kathleen's study, Knowledge of congenital cytomegalovirus (cCMV) among physical and occupational therapists in the United StatesRead more on the NationalCMV.org blogDonate to support National CMV Foundation
In this episode we're chatting with Larry Mertz, Senior Vice President of Research and Development at Meridian Bioscience. Meridian Bioscience, Inc. are makers of Alethia™ CMV MolecularAmplification Test. This assay is designed to specifically detect cCMV infection in newborns from an easy-to collect saliva sample.
CMV Panel Discussion for Parents featuring: Eva Karltorp, Marisa Mussi-Pinhata, Pablo Sanchez, and Sunil Sood. Moderator - Karen Fowler, PhDA discussion of congenital CMV – the new and interesting research and ongoing challenges/dilemmas within the field. Sponsored by National CMV Foundation at the CMV 2019 conference in Birmingham, AL - http://www.cmv2019.org
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