National CMV Foundation Podcast

Meet Jamilla H. Webb, RN, BSN—a dedicated Registered Nurse, writer, and advocate for maternal and infant health. Tune in to our latest podcast as Jamilla shares how doulas can be leveraged to assist mothers and families in reducing CMV risks and supporting early intervention efforts.

Listen in to this episode featuring our newly elected Board President, Stephanie English. Stephanie brings over 22 years of experience planning and executing complex healthcare business operation initiatives and driving sustainable business growth for leading multi-billion dollar healthcare insurance companies.

In this episode, Stephanie discusses her journey to the National CMV Foundation and shares her vision for its future, focusing on public health, awareness, and universal screening. 

Meet Matt Partain, a pediatric otolaryngologist from Indianapolis, Indiana, and a Compete4CMV team member in this year's NYC Full Marathon. Matt manages the Deaf and Hard of Hearing Multidisciplinary Clinic at the Riley Hospital for Children and decided to run on behalf of the National CMV Foundation to help support the organization's advocacy and outreach efforts for families across the country.

Jacob and John Laufer are participating in this year's NYC Marathon as part of the Compete4CMV team on behalf of the National CMV Foundation. This November, they are participating in the marathon as part of the "Miles for Milo" initiative, a personal mission inspired by Jacob's son, Milo, who was born with CMV. Through this effort, Jacob and his brother, John, are partnering with the National CMV Foundation to raise funds and awareness to create a brighter future for families affected by CMV.

Carol and Tom Vereecke are dedicated CMV advocates and the creators of Cycling 4 CMV Awareness 55! In 2020, their granddaughter, Brynn Rose, was born with congenital CMV. Since then, they have worked tirelessly to support their granddaughter and increase CMV awareness. Inspired by their granddaughter and the impact that her CMV diagnosis has had on their family, Carol and Tom have committed to turning their passion for bicycle riding into a labor of love and a mission to educate and empower those affected by CMV. Their goal is to ride in all 50 states over 5 years to raise funds to support the...

Sarah Downing is the Vice President of Global Marketing and an audiologist at Advanced Bionics. Based in Valencia, CA, Sarah has been educating, developing, and innovating in the field of cochlear implants for 20 years.  Sarah is passionate about improving accessibility in hearing healthcare and empowering our patients to live a life without limitations. 

Patty Cutshall-Bailey is an Empowering Caregiver Coach with over three decades of experience in caregiving. She specializes in assisting parents who care for children with developmental disabilities. Patty holds Bachelor's degrees in Management and HR Management and a Master's degree in Business with a concentration on Organizational Psychology and Development. She is a Master Transformational Coach and trained Profound Impact Coach. Patty's coaching approach is centered on empowerment and resilience. She works closely with caregivers to develop personalized strategies for managing stress, fostering self-care practices, and finding balance in their lives. In addition to her coaching practice, Patty is...

Mary Uran is the Board Chair/President of the National CMV Foundation. Professionally, she serves as the Managing Director of Compass Pro Bono, a national nonprofit providing free strategic consulting to local nonprofits. She recently completed ten years as the Executive Director and co-founder of Girls on the Run Twin Cities (GOTR-TC), a non-profit that empowers girls to know and activate their limitless potential and boldly pursue their dreams. Mary holds a Masters in Public Health from the University of Minnesota School of Public Health and is an alumna of the College of Saint Benedict where she was honored...

Listen in as we chat with Dr. Dave Fabry, Starkey's Chief Hearing Health Officer and Jake Spano, Director of Corporate Social Responsibility with Starkey. Dedicated to delivering the best hearing experience possible, through the innovation of custom hearing aid products and a passion for helping people, Starkey is reinventing the hearing aid. In this episode, learn about Starkey's new hearing aids, advances in hearing technology, hearing education and resources, and Starkey's commitment to corporate social responsibility.

Vanessa Colleran is an educator who lives in Oxford, MA with her husband, Peter, and sons, Sam & Julian. Vanessa is also the mother to Logan who was born with cCMV and passed away from the disease at 4 months old. Since then, she has become an advocate for cCMV prevention and awareness. Vanessa is the vice president of the Massachusetts cCMV Coalition (MCC). She also serves on the Community Advisory Board for the CMV Transmission and Immune Tracking (TransmIT) Study, a research collaboration between UMASS Chan Medical School and Moderna Inc. In 2023, Vanessa ran the NYC Full Marathon on behalf...

Danielle is the General Counsel at the Massachusetts Housing Partnership in Boston where she works with real estate developers, banks, government agencies, and non-profits to finance affordable housing developments in the Commonwealth. Danielle has extensive experience layering private and public financing sources and advising on an array of housing policy and corporate governance matters. She is a graduate of the Northeastern University School of Law (J.D.), the Boston College Lynch School of Education (M.Ed.), and the University of Michigan (B.A.), and is a former partner at the law firm of Nolan Sheehan Patten LLP. Danielle first learn...

John and his wife, Kristen co-founded the National CMV Foundation in 2014 to educate families about congenital CMV, a virus that ultimately claimed the life of their 21-month old daughter, Evelyn, in 2014.The couple are also parents to Jack and Thomas.  Professionally, John enters his first season as Assistant General Manager and eighth with the Buccaneers, having spent 20 total seasons in the NFL. Prior to being promoted to Assistant General Manager, Spytek spent two seasons as the Vice President of Player Personnel. In addition to the Buccaneers, John's experience in the NFL includes scouting for the Philadelphia Eagles, Cleveland Browns, an...

Jameka Hill is the Senior Director, Clinical Trial Health Equity at Moderna.  Within this role she is leading patient advocacy and clinical trial diversity efforts to deepen patient advocacy and community health partnerships with organizations working to meet the needs of medically underserved populations, while also embedding into Moderna’s operating model patient focused initiatives and processes that ensure historically underrepresented groups and vulnerable populations are included in the drug development process and represented in Moderna clinical trials.

For over 20 years, Jameka has focused exclusively on improving access to clinical trials as a care option for women, old...

Megan Nix is a CMV mother, nonfiction writer, and author of the recently released medical memoir, Remedies for Sorrow. Her writing has appeared in The New York Times, The Washington Post, The Boston Globe, Brain, Child Magazine, and elsewhere. Megan has served as a Community Alliance Chair for the National CMV Foundation and holds an MFA in Nonfiction Writing from the University of Alaska Anchorage. She lives between Colorado and Alaska with her husband and their five children.

Kadesha Thomas Smith is the founder and CEO of CareContent, Inc., a digital strategy agency that helps healthcare organizations take a content-first approach to website redesigns, content marketing initiatives, and online engagement. Kadesha has more than 10 years of experience in healthcare communication. Before that, she completed a Peace Corps assignment managing a teen clinic in Nicaragua. She has an undergraduate degree in journalism from Florida A&M University and a Master of Public Health from Tufts University School of Medicine. Outside of CareContent, Kadesha and her husband are active members in Christian ministry and parents of two high-energy little...

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 s...

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 fa...

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...

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 f...

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 Of...

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 ed...

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...

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 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 @sethdobson

Review Kathleen's study, Knowledge of congenital cytomegalovirus (cCMV) among physical and occupational therapists in the United States

Read more on the NationalCMV.org blog

Donate to support National CMV...

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 Molecular
Amplification 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, PhD

A 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