Being Rare Podcast

Being Rare Podcast

By Sarita EdwardsBusinessNon-Profit
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Being Rare Podcast episodes

  • Ep 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More!

    In this episode of the Being Rare Podcast, Sarita kicks off the conversation celebrating the E.WE Foundation's 5th year anniversary and why she and her husband Kareem decided to establish the foundation, which leads into the challenges of micro-small nonprofit funding.
    Sarita shares the Trisomy 18 Newborn Screening Participation Research Survey hosted by the E.WE Foundation and led by student interns Harlie Williams and Michael Yun. The survey is for families with living or unalive children who have been diagnosed with Trisomy 18. The goal of the survey is to capture how families understand newborn screening and assess their personal experiences with newborn screening processes. Complete the survey by visiting the E.WE Foundation website at theewefoundation.org/newbornscreening or by accessing the following link: https://docs.google.com/forms/d/e/1FAIpQLSfZYlbRcsnOXA6sMFwF8M3OlDSEPWE2RyvnS4_EY0Uh_eqC9w/viewform
    RAREis_ Scholarship powered by our friends at the EveryLife Foundation for Rare Diseases and Rareis_. The scholarship is for adults 17+ years living with a rare disease. Applications are open until April 22, 2024. Learn more and apply at rarescholarship.org.
    2024 MC Friend Bowl is an opportunity for exceptional students like Elijah to enjoy inclusive-styled games like football, baseball, basketball, and more! Students with disabilities are paired with students without disabilities to maneuver through sport stations and games. Elijah was paired with a high schooler who made sure he enjoyed the activities.
    Make sure to follow us on social media @beingrarepodcast.
    Find Sarita, Being Rare Podcast host on all social media platforms!
    Find our live recordings on YouTube, make sure to subscribe and turn on your notifications so you’ll know we upload new episodes.
    Find Being Rare Podcast wherever you stream and listen to your podcasts.
    Until the next episode, Be Rare!

    13 min
  • Ep 98. What Are You Telling Families Who Get A Trisomy 18 Diagnosis?

    There has been a lot of misinformation circulating about Trisomy 18 and its impact on unborn babies and pregnant moms. In this episode, Sarita challenges the fatal narrative and shares statistics about pregnancy-related deaths.

    Sarita also sits down with Kira Dineen, prenatal genetic counselor and genetics podcaster at DNA Today to discuss the information being shared with families who receive a diagnosis of Trisomy 18 for their unborn child.

    Sarita and Kira also talk about Kira's podcast and how she got started.

    Tune in to DNA Today, episode 277 to hear Sarita on Kira's show!

    Don't forget to hit that subscribe button to follow the Being Rare Podcast and follow us on social media @beingrarepodcast!

    Connect with Sarita Edwards, host of the show @saritaedwards

    25 min
  • Ep 97. March is Trisomy Awareness Month & Women's History Month

    Trisomy Awareness Month & Women's History Month

    Sarita Edwards, the host of the Being Rare Podcast, welcomes listeners to a special episode dedicated to Trisomy Awareness Month and Women's History Month. She shares the significance of March as a month to raise awareness about Trisomy conditions, particularly Trisomy 18, and highlights the theme of Women's History Month: Women Who Advocate for Equity, Diversity, and Inclusion. Learn more: theewefoundation.org/awareness

    Segment 1: Elijah News

    In this segment, Sarita shares an update on Elijah, her son diagnosed with Trisomy 18, who recently received new leg braces. She reflects on the challenges faced in obtaining appropriate orthopedic support for Elijah and expresses gratitude to A Step Ahead Orthotics for their assistance.

    Contact A Step Ahead at 256-534-0024, ask for AJ Algiers, CPO, LPO and tell him Elijah sent you!

    Segment 2: Legislative Priorities

    Sarita discusses legislative priorities related to rare diseases, focusing on the Zachary Thomas Newborn Screening Act HB 77, which aims to improve newborn screening processes in Alabama. She highlights the collaborative efforts of advocates, healthcare professionals, and policymakers in advancing rare disease legislation. Sarita also reflects on her participation in Rare Disease Week on Capitol Hill and the historic White House Rare Disease Forum. Learn more about newborn screening: theewefoundation.org/newbornscreening. Find the official White House readout and watch the livestream: theewefoundation.org/rarediseaseday

    Segment 3: E.WE Foundation News

    Listeners learn about upcoming initiatives from the E.WE Foundation, including the Health Equity Community Workshop led by Vivian Duong, an MPH student. Sarita announces the launch of a Trisomy 18 Newborn Screening research survey to address the challenges faced by families seeking newborn screening for rare conditions like Trisomy 18. Register for the Health Equity Community Workshop: theewefoundation.org/registration

    Segment 4: Special Guest on Upcoming Episode

    Sarita provides a preview of the upcoming episode featuring Kira Dineen, a pediatric genetic counselor and podcaster at DNA Today, who will discuss the role of genetic counseling in Trisomy 18 and related conditions. She encourages listeners to tune in to the insightful conversation. Check out Kira and DNA Today: dnapodcast.com.

    Check out Sarita on DNA Today, episode #277: https://www.podbean.com/ep/pb-qk3nj-158f3ce

    Make sure to following Being Rare on social media @beingrarepodcast and on YouTube: youtube.com/@theewefoundation/podcasts

    You can also find Being Rare wherever you stream your podcasts!

    Thank you for tuning in to Episode 97 of the Being Rare Podcast. Until the next time, Be Rare!

    23 min
  • Ep 92. Know Your Family History: A Conversation About Health Legacy #podcast #family #health #legacy
    October is Know Your Family History Month. Being Rare Podcast host Sarita Edwards is joined by today's co-hosts Jasmine Hightower and Hana Faulds to discuss the importance of knowing family health history and how medical diagnoses can impact generational health legacy.
    Connect with our hosts by visiting youtube.com/@theewefoundation/podcasts!
    Watch the live recording on YouTube! Find more episodes wherever you stream your podcasts!
    57 min
  • Ep 91. Let's talk about Newborn Screening in Alabama
    In this episode Sarita is joined by Swapna Kakani, Jasmine Hightower, and briefly by Brooke Thomas to talk about newborn screening, state advocacy, and the impact NBS has on babies and their parents.
    *Due to external technical difficulties Brooke's audio and video did not record to this episode. There is a brief moment of silence.
    49 min

About Being Rare Podcast

From the publisher's feed

The Being Rare podcast intersects rare disease, leadership, and systems change. It examines how policy, clinical practice, innovation, and institutional decision-making shape the lived experience of being rare, whether as a patient, caregiver, clinician, advocate, or leader.

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