Explore the untold stories of females impacted by X-linked conditions. Hosted by Emma Bliss and Taylor Kane of Remember The Girls, “collectively coeXisting” brings to light the reality of being a female impacted by an X-linked condition and the general challenges women face within the healthcare system.
Hear from X-linked carriers and affected females about their journeys with genetic testing, family planning, physical symptoms, mental health, and everything in between. Also learn from experts about topics such as carrier screening, genetic counseling, advancements in research, and more.
Ep. 69: Discussing Family Health History with Dena DNA
Dena is a board-certified genetic counselor with 9 years of clinical experience, a content creator, science communicator and healthcare thought leader. Formerly the Endowed Counselor of Hereditary Gastrointestinal Cancer Prevention with the UCSF Cancer Genetics and Prevention program, she left clinic to grow her personal brand, Dena DNA, a media brand with a mission to spread awareness of medical genetics and genetic counseling to the general public through media and marketing techniques not typically used by the medical community. Dena has consulted for major laboratories and creates sponsored content for companies and organizations in the genetics and healthcare space. Dena draws, animates, writes, voices, films, and edits many different forms of content. As the most followed genetic counselor on social media, with over 75,000 followers across platforms, and her years of social media experience, she has her finger on the pulse of trending health topics.
Dena is also a sibling of an adult with a chromosome abnormality, an undiagnosed disease patient and a fertility/IVF warrior. Her exposure to the healthcare system as a patient AND provider has given her valuable insights and a unique perspective on the future of healthcare and educational needs.
She has also appeared as an expert on TV news segments and as a media personality. She currently sees patients via telemedicine through her private practice, Malibu Genetics Concierge, where she specializes in cancer genetics and preventive medicine.
For more information about our organization, check out rememberthegirls.org (https://rememberthegirls.org).
31 Mar 2025
Ep. 68: Choroideremia with Michelle Holbrook
*This month in partnership with Choroideremia Research Foundation (https://www.curechm.org/)*
Our Carrier Connections program features a different X-linked condition each month to increase awareness of X-linked conditions and how they impact the lives of women and girls.
This month, we are featuring choroideremia (CHM). CHM is an X-linked disorder caused by mutations in the gene CHM, which produces a protein that plays a critical role in the cell’s ability to transport proteins and organelles within and outside of the cell. When this gene is dysfunctional, the cell can no longer support this protein escort ability, resulting in premature cell death, primarily in the eyes. Typically, this condition is characterized by progressive vision loss. These symptoms may begin at any age, but tend to onset between childhood and adulthood. Females carriers of CHM have been proven to experience a spectrum of symptoms, ranging from mild to severe retinal degeneration.
Our guest today is Michelle. She is a mom of two incredible boys with CHM, doing whatever she can to find a treatment.
Carrier Connections is sponsored by Kyowa Kirin and Amgen.
For more information about our organization, check out rememberthegirls.org (https://rememberthegirls.org).
10 Mar 2025
Ep. 67: X-Linked Retinal Diseases with Dr. Sena Gocuk
*This month in partnership with Choroideremia Research Foundation (https://www.curechm.org/)**
Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls.
This month, we are featuring choroideremia (CHM). CHM is an X-linked disorder caused by mutations in the gene, CHM, which produces a protein that plays a critical role in the cell’s ability to transport proteins and organelles within and outside of the cell. When this gene is dysfunctional, the cell can no longer support this protein escort ability, resulting in premature cell death primarily in the eyes. Typically, this condition is characterized by progressive vision loss. These symptoms may begin at any age, but tend to onset between childhood and adulthood. Females carriers of CHM have been proven to experience a spectrum of symptoms, ranging from mild to severe retinal degeneration.
Today, we are featuring Dr. Sena Gocuk. Dr. Gocuk is an optometrist and postdoctoral research fellow specialising in inherited retinal diseases (IRD), with a particular focus on female carriers of X-linked IRDs. Her research explores the unique challenges female carriers face, from variability in disease expression to their underrepresentation in clinical trials. Dr. Gocuk has led innovative studies investigating retinal changes in female carriers, providing insights into emerging treatments such as gene therapy. She is an advocate for the inclusion of female carriers in research and treatment interventions, regularly sharing her findings to promote better care and access for this often-overlooked population.
RESOURCES:
Choroideremia Research Foundation (https://www.curechm.org/)
Retinal Characteristics of Female Choroideremia Carriers: Multimodal Imaging, Microperimetry, and Genetics (https://www.sciencedirect.com/science/article/pii/S246865302400304X)
Longitudinal assessment of female carriers of choroideremia using multimodal retinal imaging (https://pubmed.ncbi.nlm.nih.gov/39122355/)
Female carriers of X-linked inherited retinal diseases - Genetics, diagnosis, and potential therapies (https://pubmed.ncbi.nlm.nih.gov/37406879/)
Carrier Connections is sponsored by Kyowa Kirin and Amgen.
For more information about our organization, check out rememberthegirls.org (https://rememberthegirls.org).
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
YouTube views
1,440
Score snapshot 15 Sept 2025
Apple Podcasts (US)
5.0 / 5
1 ratings
Spotify
4.8 / 5
4 ratings
Podcast Authority Score: 59 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
65
Social presence
0
YouTube
68
Engagement
68
Contact collectively coeXisting
Guest appearances
Books guests
Based on episode analysis; this does not confirm that the show is currently accepting guests.
Host of collectively coeXisting?
Claim your podcast to manage its listing and keep your show details accurate.
Pod Engine is an independent podcast discovery and analytics service and is not affiliated with or endorsed by this podcast. Artwork and show content belong to their owners. Full legal notice.
Explore this show Podcast research with Pod Engine
