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 --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

#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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

In this Being Rare Podcast episode Sarita talks about grief and how it can unexpectedly overwhelm you. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

Today's One Minute Monday is about prepping for my first colonoscopy! Listen to 60 seconds of Being Rare! --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support