Being Rare Podcast

EP 109. Navigating Life with Ataxia SCA15

In this episode of the Being Rare Podcast, host Sarita Edwards sits down with Michael Mantz, a business owner, writer, and advocate living with Ataxia SCA15, a rare and p

EP 108. Big Ride, Bigger Mission with Royce Robertson

In this episode, Sarita sits down with Royce Robertson—a husband, father, patient, and advocate. Royce shares his personal journey of being misdiagnosed and nearly underg

Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report

In this episode, Sarita is joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC), to discuss the Inequities in the Rare Disease Com

Ep 106. Being Rare and Black: A Rare Disease Day Exclusive

In this episode of the Being Rare Podcast, Sarita sits down with James Griffin and Genesis Jones, patient advocates and authors. We're talking about navigating life with

Ep 105. Prioritizing Self Care Part 2: Finding What Works For You

In this episode of the Being Rare Podcast, Sarita sits down with NASM certified trainer and professional bodybuilder, Coach Jeff Benton to talk about the value of priorit

Ep 104. Prioritizing Self Care Part 1: My Body Forced Me to Change

In this episode, Sarita shares how self care became a forced priority. A planned medical procedure uncovered a near death health episode. Tune in to hear how Sarita trans

Ep 103. Transitioning Truths: Navigating A Medically Complex Diagnosis From Childhood to Adulthood

In this Being Rare Podcast episode, Sarita is joined by Dr. Shane' Jackson, a wife, mom, minister, youth director, and two-time author to talk about transitioning from ch

Ep 102. Hello 2025: What's In, What's Out - Being Rare Edition

In this episode, Sarita is joined by her daughter Rian to talk about their 2025 ins and outs, being rare edition! Listen in to hear what they're leaving in 2024 and all t

Ep 101. What's happening in May? Myositis Moonwalk, Mother's Day, Mental Health, One Minute Mondays

In this episode, Sarita talks about - spending Saturday at the US Space and Rocket Center in Huntsville, AL supporting the Myositis Moonwalk - Mother's Day happening S

Ep 100. Protecting Our Futures: Black Maternal Health and Child Abuse Neglect & Prevention

In this episode, Sarita talks about black maternal health and child abuse neglect and prevention. April 11-17 is Black Maternal Health Week. Black women are three times

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 dec

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 narrat

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 Awarenes

Ep 96. How We Chose to Navigate the Holidays and the Final "Happy New Year" of 2024!

This episode of the Being Rare Podcast is filled with laughter! Listen in as Sarita and her husband, Kareem talk about navigating the holiday season and kicking off anoth

Ep 95. We Haven't Spoken Since Last Year, Happy New Year!

#happynewyear #podcast #update In this episode of the Being Rare Podcast Sarita shares new fitness goals, a holiday snippet, and an announcement about an upcoming episo

Ep 94. Navigating the Holidays with Rare Disease #podcast #holidays #raredisease #selfcare

The holiday hustle might not align with our individual health care needs. In this mini episode Sarita shares a few tips that might help with navigating the holiday season

Ep 93. Overwhelmed by Grief #podcast #grief #raredisease #trisomy18

In this Being Rare Podcast episode Sarita talks about grief and how it can unexpectedly overwhelm you.

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 importanc

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

Ep 90. Who's responsible for providing parents newborn screening information? #podcast

Who's responsible for providing parents newborn screening information and when should they do it? This episode of the Being Rare Podcast is about the importance of parent