Being Rare Podcast

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 progressive neurodegenerative disorder.From his forthcoming memoir to building a community that celebrates resilience, this conversation is all about showing up authentically, even when life feels unsteady. Through his blog and new brand Inspire Thread, Michael brings visibility to those navigating rare, invisible, or progressive conditions. Hear more from Michael and his journey in today's episode!

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 undergoing a critical procedure before discovering he had cardiac sarcoidosis, a condition many healthcare providers still know little about.Royce started cycling to raise awareness and push for equitable healthcare access for all families, especially those in rural and underserved communities. This episode highlights race, misdiagnosis, gaps in provider knowledge, and how Royce turned pain into purpose.Tune in for a conversation about resilience, advocacy, and what it really takes to pay it forward. Follow Royce on Instagram @cycle4sarc.

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 Community Report completed in partnership with the National Organization for Rare Disorders (NORD).This research involved over 2,800 participants and sheds light on the barriers faced by underrepresented patients with rare diseases. Tune in as we delve into this groundbreaking national survey, while offering critical insights into healthcare access challenges.Learn more about RDDC and NORD:RDDC at rarediseasediversity.org NORD at rarediseases.org

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 sickle cell, healthcare bias, stigma, and more!The books mentioned in this episode can be found on Amazon. Direct links are below.Breaking Silence: Living with Sickle Cell Anemia by James Griffin III https://a.co/d/3znpc3sRebirth: A Sickle Cell Warrior's Crossover (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/3lVQL7ZResilient: Reflections of a Sickle Cell Journey (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/73XsFla

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 prioritizing self care into your daily routine. Interested in personal training or coaching? In-person and virtual options available. Personal instruction. Nutrition monitoring. One-on-one or group. Bodybuilding contest prep and coaching also available. Contact Coach Jeff to learn more: Email: [email protected] Instagram: @the_eclipse615 Watch: https://buff.ly/4hMTIix

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 transformed her health and changed her life. Watch the live recording: https://youtu.be/B9LKxNeZgq0

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 childhood to adulthood while navigating a medically complex diagnosis. Dr. Jackson's new book “A JOURNEY TO BEING” SAVED. HEALED. EVOLVING.: 30 DAYS OF DEVOTIONAL IMPARTATION is available for purchase on Amazon.

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 that's welcomed in 2025.

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 Sunday, May 12 - May being Mental Health Awareness Month - the E.WE Foundation's new Mental Health Training and Certification Program- the return of One Minute Mondays - and the passing of the Zachary Thomas Newborn Screening Act in Alabama. Tune in to check out the highlights and updates!

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 more likely to die from a pregnancy-related cause than white women. The month of April is dedicated to Child Abuse and Neglect Prevention. Children with disabilities are at least three times more likely to be abused or neglected than their peers without disabilities. Tune in as Sarita shares stats, a personal experience, and resources! Watch the live recording on YouTube: https://youtu.be/ECaXKysDPyA

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!

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

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!

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 another new year! Watch on YouTube! https://buff.ly/42fK81f

#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 episode.

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. Don't forget to subscribe to Being Rare Podcast and follow along wherever you listen to your podcasts.

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

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!

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.

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 education with regard to newborn screening and what it means for newborns and their parents.

Today's One Minute Monday is about 9/11. As we celebrate my husband's birthday, we recognize how difficult today is for so many others! We're thinking of you!

This Being Rare Podcast episode is continuing the conversation about newborn screening and how The Edwards did not receive the screening test for their son, Elijah.

September is Newborn Screening Awareness Month! In this Being Rare Podcast episode, Sarita talks about the healthcare system refusing them newborn screening for their newborn.

This One Minute Monday is about peer support. We hosted our first virtual peer support group a few days ago. Listen to 60 seconds of Being Rare to hear how it went.

In this Being Rare Podcast episode Sarita talks about an experience they had at a local church's kid zone. Tune in to hear what happened!

Today's One Minute Monday is about inclusion. Elijah participated in his first small group at church. Listen to 60 seconds of Being Rare to hear about the experience!

In today's Being Rare Podcast episode, Kareem and Sarita share details about navigating a summer road trip with their medically complex child. Listen as they share the trickiness to coordinating rest breaks and nutritional needs, all while having fun!

Today's One Minute Monday is about prepping for my first colonoscopy! Listen to 60 seconds of Being Rare!

Sarita, girl, where you been? This episode gives insight into the recent Being Rare Podcast hiatus, new format for the show, and peek into Sarita's self care regime.

Making yourself a priority is important to maintaining self care and mental health. Enjoy this sizzle. Catch the full episode on Wednesday, Aug 9.

Today's episode is about choosing to make myself the priority! Enjoy 60 seconds of Being Rare!

We kicked off Season 3 of the Being Rare Podcast back in May... Here's our first official episode and why it took us so long to upload it! Follow along for more! #BeingRare #Podcast #podcaster

Today's One Minute Monday is about isolation. A rare mom shared that she attended an in person event for families with her child's diagnosis hoping to connect with other families. Mom said no one approached her and she left feeling more isolated than she did when she arrived. Listen to 60 seconds of Being Rare to hear more!

March is Trisomy Awareness Month! March 18 is World Trisomy 18 Day! In this episode Sarita sits down with two E.WE Foundation partners to discuss the resources and support they provide to Trisomy families. Hear from Sonny Mullen, Help Hope Live and Dr. Deborah Bruns, TRIS Project. Learn more at: Help Hope Live - helphopelive.org TRIS Project - tris.siu.edu E.WE Foundation - theewefoundation.org Being Rare Podcast - theewefoundation.org/podcast

In today's One Minute Monday Sarita is airing a public service announcement that bullying, in any form, is not okay! Listen as she shares 60 seconds of Being Rare!

Today's One Minute Monday is about words. On two different occasions, someone dear to me said the word "retarded". They themselves didn't use the word, they shared how someone had used the word in their presence. Hear more in today's One Minute Monday episode! 

Today's One Minute Monday is about community. Sarita spent the past several days in Washington, DC with other rare advocates. She talks about the isolation that comes with receiving a rare diagnosis and how community became family. Listen to 60 seconds of Being Rare!

A raw conversation about race, health, and stigma!   Being Rare Podcast host Sarita Edwards sits down with Stacey Brown, Georgene' Glass, and Dionne Stalling to discuss navigating life with rare disease and as rare disease caregivers, while black. No topic is off limits!   Social media: Stacey Brown: Wombless and Worthy https://www.instagram.com/womblessandworthy/  Georgene' Glass: DreamSickle Kids Foundation  https://dreamsicklekids.org/ https://www.facebook.com/dreamsicklekids/ https://www.instagram.com/dreamsicklekids/[email protected]   Dionne Stalling: Rare & Black https://www.facebook.com/rareandblack/ https://www.instagram.com/rareandblack/[email protected]   Connect with Sarita  @theewefoundation  https://www.facebook.com/beingrarepodcast https://www.instagram.com/beingrarepodcast https://linktr.ee/[email protected]

Today's One Minute Monday is about friendship. I saw a post on social media where a mom was looking to hire someone to be her child's friend. Mom thought a friendship job is the only way to get someone to show up when they say they will. Listen to 60 seconds of Being Rare!

Our daughter shared briefly with adults that she felt "left out" after learning of Elijah's diagnosis from relatives. The adults immediately [seemingly] began to judge how we chose to tell our children. Listen as Sarita shares 60 seconds of Being Rare!

Today's One Minute Monday is about collaboration. Sarita was asked to not join a virtual meeting due to conflict of interest. If patients are truly our priority, the mission is connecting patients to resources even if that means referring them to someone else. Someone not wanting you present doesn't mean you don't deserve to be. Listen as Sarita shares 60 seconds of Being Rare!

Today's episode of Being Rare Live is about self care and the importance of prioritizing yourself when navigating a rare disease journey. Being Rare host Sarita Edwards joined by Dr. Aditi Kantipuly, Michelle Fruhshien, and Jeffrey Benton to talk about how you can start your self care routine in as little as 7 minutes in the comfort of your home.    Connect with Sarita on social media @SaritaEdwards   Connect with our guests:  Dr. Aditi Kantipuly - author of The Zebra Alphabet, world's first alphabet book for rare conditions spreading kindness one alphabet at a time and creator of #movefor7, a movement to encouraging folks to commit to 7 minutes of intentional movement and share the movements publicly on social media platforms  https://thezebrabook.com/ https://www.instagram.com/thezebraalphabet/   Michelle Fruhshein - wife and rare mom, digital creator, Jordan Syndrome advocate, raising awareness one reel at a time, special educator https://www.instagram.com/mamabearforrare   Coach Jeffrey Benton - National Academy of Sports Medicine Certified Personal Trainer and health enthusiast https://www.instagram.com/coach.jeffb_ Watch the live recording at https://youtu.be/P9rtoWTjYaU

Today's One Minute Monday is about school support. Students with special health needs have the right to an Individualized Education Plan (IEP) at their school. All stakeholders - parents, educators, administrators - should be on one accord when identifying a student's needs and what the school can provide. We're grateful for Elijah's school team who's helping us help Elijah be the best student he can be! Listen to 60 seconds of Being Rare!

Today's One Minute Monday is about selfishness. Elijah's school has this really cool accessibility lane for families transporting children with special health needs. What's uncool is when someone uses the lane as a parking spot, blocking users from passing through. Hear more in today's one minute Monday!

Self care is about being the best version of you. For quite some time, I missed out on the true meaning of self care because I was convinced it had to look a certain way. Self care is not about doing something by yourself. Self care is doing something for yourself. Our self care routines can be different and they can include others. Self care is about taking care of you however you choose to do so! Listen to 60 seconds of Being Rare's One Minute Monday!

The new year is about new beginnings, starting over, resolutions, etc. Whatever you call it, it's about resolving to be the best version of yourself, for yourself. The beginning of a new year, and all year long, is not about fixing something broken; it's about changing something that no longer serves you. 

Navigating the holiday season isn't always easy for rare families. We're thankful for our journey and for those we get to navigate it with. Thank you!

October is National Family History Month. In this exclusive Being Rare Podcast *Live we're talking about the importance of knowing your family's health history. In this episode, Sarita is talking with her husband Kareem Edwards and friend Heather Gjesvold about how family diagnoses help them proactively coordinate their own health.   Subscribe to our Being Rare Podcast *Live YouTube channel. Find and follow us on Facebook and Instagram @beingrarepodcast! Find Sarita on social media @saritaedwards

October is National Family History Month. In this exclusive Being Rare Podcast *Live we're talking about the importance of knowing your family's health history. In this episode, Sarita is talking with Maria Della Rocca, Senior Director of Patient Services at Global Genes and Molly Martzke, Senior Program Manager at the National Genetics Education and Family Support Center at Expecting Health.   Subscribe to our Being Rare Podcast *Live YouTube channel. Find and follow us on Facebook and Instagram @beingrarepodcast! Find Sarita on social media @saritaedwards

In this One Minute Monday episode Sarita talks about a peek-a-boo encounter with a little girl at the grocery store. Listen to 60 seconds of Being Rare!