Being Rare Podcast
By Sarita Edwards
Being Rare PodcastMay 04, 2024
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 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!
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 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
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!
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
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!
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 another new year!
Watch on YouTube! https://buff.ly/42fK81f
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 episode.
Ep 94. Navigating the Holidays with Rare Disease #podcast #holidays #raredisease #selfcare
Don't forget to subscribe to Being Rare Podcast and follow along wherever you listen to your podcasts.
Ep 93. Overwhelmed by Grief #podcast #grief #raredisease #trisomy18
Ep 92. Know Your Family History: A Conversation About Health Legacy #podcast #family #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!
Ep 91. Let's talk about Newborn Screening in Alabama
*Due to external technical difficulties Brooke's audio and video did not record to this episode. There is a brief moment of silence.
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 education with regard to newborn screening and what it means for newborns and their parents.
Ep 89. 9/11 #podcast #911 #beingrare
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!
Ep 88. A Poor Newborn Screening Experience
Ep 87. Our Newborn Was Refused Newborn Screening
Ep 86. One Minute Monday - Peer Support #podcast #oneminute #peersupport #supportgroup
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.
Ep 85. A Church Experience
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!
Ep 84. The Small Group - #Inclusion #podcast #raredisease #church #smallgroup
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!
Ep 83. Summer Road Trip
Ep 82. One Minute Monday - Preparation #podcast #selfcare #mentalhealth #beingrare
Today's One Minute Monday is about prepping for my first colonoscopy! Listen to 60 seconds of Being Rare!
Ep 81. Ten Minutes of Sarita - Full episode
Ep 81 #sizzle - Prioritizing Self Care #podcast #beingrare #selfcare #mentalhealth
Making yourself a priority is important to maintaining self care and mental health. Enjoy this sizzle. Catch the full episode on Wednesday, Aug 9.
Ep 80. One Minute Monday - Priorities
Ep 79. Welcome to Season 3 of the Being Rare Podcast!
#BeingRare #Podcast #podcaster
Ep 78. One Minute Monday: Isolation - When You Don't Feel Welcomed
Ep 77. Trisomy Awareness Month! A conversation with E.WE Foundation partners
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
Ep 76. One Minute Monday: Bullying - When Your Kid Is The Joke Of Conversation
Ep 75. One Minute Monday: Words - When Someone Uses The Word Retarded
Ep 74. One Minute Monday: Community - When Community Becomes Family
Ep 73. A Being Rare Podcast - Rare Disease Day Exclusive #podcast #beingrare #raredisease
Ep 72. One Minute Monday: Friendship - Hiring Your Child A Friend
Ep 71. One Minute Monday - Feeling Judged
Ep 70. One Minute Monday: Collaboration - When You're Not Wanted
Ep 69. Self Care - The Importance of Prioritizing Yourself #selfcare #raredisease
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 thezebrabook.com/ www.instagram.com/thezebraalphabet/
Michelle Fruhshein - wife and rare mom, digital creator, Jordan Syndrome advocate, raising awareness one reel at a time, special educator www.instagram.com/mamabearforrare
Coach Jeffrey Benton - National Academy of Sports Medicine Certified Personal Trainer and health enthusiast www.instagram.com/coach.jeffb_
Watch the live recording at youtu.be/P9rtoWTjYaU
Ep 68. One Minute Monday: School Support - Helping Students Be Their Best
Ep 67. One Minute Monday: Selfishness - When Accessibility is Inaccessible
Ep 66. One Minute Monday - Self Care and What It Means For You
Ep 65. One Minute Monday - Happy New Year : Being Your Best You
Ep 64. One Minute Monday - Being Thankful
Ep 63. Know Your Family History Part 2 with Kareem Edwards and Heather Gjesvold
Subscribe to our Being Rare Podcast *Live YouTube channel. Find and follow us on Facebook and Instagram @beingrarepodcast! Find Sarita on social media @saritaedwards
Ep 62. Know Your Family History Part 1 with Maria Della Rocca and Molly Martzke
Subscribe to our Being Rare Podcast *Live YouTube channel. Find and follow us on Facebook and Instagram @beingrarepodcast! Find Sarita on social media @saritaedwards
Ep 61. One Minute Monday - Being Supportive: No One Likes Feeling Judged
Ep 60. Newborn Screening Awareness: Understanding Baby's First Test
Don't forget to subscribe to Being Rare wherever you listen to your podcast!