Being Rare Podcast: Recent Episodes
Sarita Edwards
Being Rare is an online resource hub and community conversations platform. We'll have intimate and sometimes difficult conversations about living with rare disease, disability, medical complexities, and special health needs. Popular for our 1 minute episodes, Being Rare offers insight, perspective, and positive reinforcement. Hosted by Sarita Edwards, a world's top patient expert, award winning advocate, global speaker, and CEO.
Email us podcast@theewefoundation.org.
Follow us on social media! IG: @beingrarepodcast TW: @beingrarepod
Other ways to connect: linktr.ee/ewefoundation Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support
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
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
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
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
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
Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support
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!
--- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support
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
--- Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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/info@dreamsicklekids.org
Dionne Stalling: Rare & Black https://www.facebook.com/rareandblack/ https://www.instagram.com/rareandblack/info@rareandblack.org
Connect with Sarita @theewefoundation https://www.facebook.com/beingrarepodcast https://www.instagram.com/beingrarepodcast https://linktr.ee/ewefoundationpodcast@theewefoundation.org
--- Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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--- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/appSupport this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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!
--- Support this podcast: https://anchor.fm/beingrare/support
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. --- Support this podcast: https://anchor.fm/beingrare/support
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!
Support this podcast: https://anchor.fm/beingrare/support
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
Support this podcast: https://anchor.fm/beingrare/support
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
Support this podcast: https://anchor.fm/beingrare/support
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!
Support this podcast: https://anchor.fm/beingrare/support
September is Newborn Screening Awareness Month. Newborn screening is a public health service that screens babies for some conditions. Today we're talking about newborn screening awareness and the importance of parent education. Joining the conversation is a Mom, Briyana Brown, parent to a 4 year old and a 1 year old, and Natasha Bonhomme, the driver at Expecting Health, a leading resource in newborn screening education.
Don't forget to subscribe to Being Rare wherever you listen to your podcast!
This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/beingrare/support
A mom's kind interest in Elijah is the prompt for today's one minute Monday! This One Minute Monday is about thoughtful curiosity. Elijah isn't your typical 5 year old so, to us, sharing his "differences" is part of our awareness. Listen thoughtfully to 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about Intentions. Sometimes our best intentions can be both harmful and hurtful especially when it's advice we haven't been asked to give. Listen to 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
Today's One Minute Monday is about germs. Germs are unavoidable and everywhere. It's our job to make sure "our" germs aren't contagious or a threat to ourselves or others. Prepare for them and control the spread. Listen to 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about transitions. A few weeks ago Elijah started Kindergarten. Transitioning to this new environment was probably more difficult for us as parents than it actually was for Elijah. Listen to 60 seconds of transitioning and new experiences.
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about taking a break. Six weeks ago I had a major surgery that removed me from my normal activities. Today I had my 2nd post-op appointment; and I have been cleared and released to ease back into my normal routines. Taking a break is critical to our overall health and well-being. Listen as I share 60 seconds of taking a break!
Support this podcast: https://anchor.fm/beingrare/support
This is the exclusive audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit.
The LEAP into Advocacy Virtual Summit was held on June 30, 2022. The theme for this year's summit is Utilizing Social Health and Digital Concepts to Influence Critical Health Decisions. The LEAP into Advocacy summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. The summit includes four specialty sessions, including insights from experts, researchers, counselors, advocates, and more. Session One: Utilizing Social Health Concepts for Transformative Healthcare Solutions; Session Two: Using Culturally Appropriate Resources to Influence Health Equity & Access; Session Three: Leveraging Digital Concepts to Advance Accessibility; Session Four: Advocacy and the Legislative Landscape.
The E.WE Foundation is a 501c3 healthcare advocacy organization. Learn more at www.theewefoundation.org
This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/beingrare/support
Session One of the LEAP into Advocacy Virtual Summit is titled Utilizing Social Health Concepts for Transformative Healthcare Solutions. The session moderator is AudreyStephannie Maghiro, Research Coordinator at the Undiagnosed Diseases Network. The session presenters are Health Union's Sarah Coff, Senior Community Manager and Kristine Zerkowski, Vice President of Community. The fireside chat includes Sarah Coff, Senior, Kristine Zerkowski, and Ilana Jacqueline, Associate Director of Community Development at Health Union. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.
This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/beingrare/support
Session Two of the LEAP into Advocacy Virtual Summit is titled Using Culturally Appropriate Resources to Influence Health Equity and Access. The session moderator is Sheyenne Walmsley, MS, Genetic Counselor and Project Manager with the Genomes2People Research Program at Brigham and Women’s Hospital and Harvard Medical School. The session presenter is Dr. Shruti Mitkus, Director of Genetic Education and Navigation at Global Genes. The fireside chat includes Dr. Shruti Mitkus, Luisa Leal, Founder of the Akari Foundation, and Bethany Zettler, Senior Genetic Counselor and Project Manager with the Genomes2People Research Program at Brigham and Women’s Hospital and Harvard Medical School. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.
This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/beingrare/support
Session Three of the LEAP into Advocacy Virtual Summit is titled Leveraging Digital Concepts to Advance Accessibility. The session moderator is Being Rare Podcast Host and CEO & President at the E.WE Foundation, Sarita Edwards. The session presenters are Christine Von Raesfeld, Founder & CEO at People with Empathy and Niki Bonet, Digital Solutions Specialist. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.
This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/beingrare/support
Session Four of the LEAP into Advocacy Virtual Summit is titled Advocacy and the Legislative Landscape. The session moderator is Shivani Vyas, Host of The Rare Disorder Podcast. The session presenters are Ella Balassa, Patient Advocate & Consultant and Laura Romano, Patient Advocate. The fireside chat includes Ella Balassa, Laura Romano, and Jennifer Harris, Health Policy Advocate at Alabama Arise. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.
This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about distractions. One of my biggest pet peeves is folks on their phones while driving. Distractions can cause injury and harm, not just to ourselves but to those around us. Listen as Sarita shares 60 seconds of Being Rare: Distractions.
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about patience. Traditional timelines don't accurately measure developmental milestones - at least not for all children. It's easy to become impatient and discouraged when our [rare] kiddos fall in the delayed development category. Listen to 60 seconds of Being Rare with Patience!
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about being delayed. After traveling several days for business I found myself delayed, stranded, and delayed again. Sometimes the road to our destination presents unforeseen challenges; but a delay is not an automatic denial. Listen to 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about poop, yep, poop! For the past few days, Elijah has kept us in an abundance of poopisodes. His GI system is determined to keep us on our toes and in the bathroom. Some poopisodes are very hard to endure, while others are adventurous and fun. Listen to 60 seconds of Being Rare: Poopisode edition.
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about perception. Having a kid who requires a lot of hands-on care can be hard. One of the worse feelings is perceiving that someone [responsible for providing care] doesn't want to be bothered. Listen to 60 seconds of Being Rare: Perception
Support this podcast: https://anchor.fm/beingrare/support
Today’s conversation is a collaboration between the E.WE Foundation's LEAP Program and Being Rare Podcast. We're talking about Moms & Mental Health: The Importance of Self Care. Self-care is taking all the steps you can to take care of your physical health and well-being, including hygiene, nutrition, managing stressors, and seeking medical care if needed. Self-care is important to maintaining a healthy relationship with yourself. Self-care is about the things we can do to look after our own mental health. Our panelists for today’s conversation are: Stephanie Allen, Licensed Professional Counselor & Mental Health Services Coordinator Shane’ Jackson, Coordination of Benefits Analyst & Parent Advocate Dr. Ashley Perkins, Doctor of Pharmacy & Mental Health Advocate Parvathy Krishnan, Global Advocacy Alliance Director & Parent Advocate Stay up to date on current conversations by subscribing to Being Rare wherever you listen to podcasts!
The E.WE Foundation is a 501c3 healthcare advocacy organization. Learn more at www.theewefoundation.org.
This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about shared spaces. Many of us started foundations, podcasts, and blogs because we needed or noticed something missing. In that, this spirit of competitiveness [sometimes] arises creating silent discord among the community - a community otherwise in alignment. The rare space, and any space, can be welcoming and full of love when you go in giving that which you're looking to receive. Listen to 60 seconds of Being Rare: Shared Spaces.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about trust. Five days a week we send our children to school to be supervised by someone we don't know. They come home talking about their day; all except Elijah. Elijah is small, has limited mobility, and is nonverbal. Because he can't tell us about his day, we have to trust the system and the people responsible for him. Listen to 60 seconds of Being Rare: Trust.
Support this podcast: https://anchor.fm/beingrare/support
Being Rare Podcast welcomes Kate Hart for this special Mother's Day edition episode. Kate is a Trisomy 18 Mom and advocate. Listen as Kate shares love and loss for sweet Hannah, her daughter who was diagnosed in utero with Trisomy 18. Hannah passed away after living 54 days.
Join the conversation by following Being Rare wherever you listen to your podcast!
Connect with us on social media: IG: @beingrarepodcast TW: @beingrarepod
Email us: podcast@theewefoundation.org
Other ways to connect: linktr.ee/ewefoundation
Support this podcast: https://anchor.fm/beingrare/support
We all like new things because "new" brings an overwhelming sense of accomplishment. But, sometimes, we shy away from new experiences because the process to achieving "new" is difficult. It's easy to settle in the familiar when the process to newness is hard. Listen to 60 seconds of Being Rare: New Beginnings!
Support this podcast: https://anchor.fm/beingrare/support
In the US, at least 1 in 7 children experience child abuse or neglect annually. Children with disabilities are at least three times more likely to be abused or neglected than their peers without disabilities, and they are more likely to be seriously injured or harmed by maltreatment. This episode is about child abuse prevention, resources, and support. Joining the conversation is Sallye Longshore, Director, Alabama Department of Child Abuse and Neglect Prevention, The Children’s Trust Fund and Stephanie Wright, Director of Family Services, UCP of Huntsville and Tennessee Valley, Inc.
The E.WE Foundation is a 501c3 healthcare advocacy organization and sponsor of the Being Rare Podcast. Learn more at www.theewefoundation.org.
The Children's Trust Fund www.ctfalabama.gov
UCP Huntsville and Tennessee Valley www.ucphuntsville.org
*The video of this conversation can be found on our YouTube channel
Support this podcast: https://anchor.fm/beingrare/support
This One Minute Monday is about pressure. Sometimes we put way too much pressure on ourselves about almost everything. We've learned that living authentically is so much healthier than creating a perfectly false environment for ourselves or those around us. Listen as Sarita shares 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about celebrating Elijah's birthday today along with every other day, adventure and new milestone! Listen to 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
This Being Rare episode is about financial advocacy. Financial advocacy in the context of health involves the ability to assess, understand, and use financial information in ways that support good health and financial outcomes. Understanding Financial Advocacy will explore financial concepts and enhance awareness about best practice financial solutions. Today's guest is Dustin Mayo, Vice President, Retail Market Manager, Synovus Bank.
Connect with Dustin: linkedin.com/in/dustinbmayo | instagram.com/dustinbmayo | dustinbmayo@gmail.com
Connect with Sarita: linkedin.com/in/saritakedwards | twitter.com/saritaedwards | facebook.com/edwards4real | instagram.com/therealedwards | sarita@theewefoundation.org
Connect with the E.WE Foundation: www.theewefoundation.org | facebook.com/everyoneiswe | instagram.com/everyone.is.we | twitter.com/everyoneiswe | linkedin.com/company/e-wefoundation
Support this podcast: https://anchor.fm/beingrare/support
March is Trisomy Awareness Month! Kareem and Sarita sat down with Joe Ott, Inspirational Radio Host for WACE AM 730 to talk about Trisomy 18 and how the E.WE Foundation is raising awareness, providing support, and shifting the conversation surrounding the diagnosis.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode Sarita talks about emotions. We sometimes shelter our emotions for fear of looking weak. Likewise, sometimes we shelter our emotions for fear of looking angry. Emotions aren't bad and how we express them doesn't have to be pretty. Listen to 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode Sarita talks about community. Today is Rare Disease Day - a day for the rare disease community to raise awareness about the more than 7,000 rare diseases affecting 300 million individuals globally. Listen as Sarita shares 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
Being Rare Podcast is excited to welcome Sarah Tompkins, patient advocate and Ms. Wheelchair Washington USA 2022!
Rare Disease Day is a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally! Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose. This exclusive Rare Disease Day episode is about advocacy, pageantry, and finding confidence as a rare disease patient.
To connect with Sarah, Ms. Wheelchair Washington USA 2022 or to learn more about sponsorship opportunities, email Sarah at Sarestbearest@gmail.com.
Ms. Wheelchair USA: Ms. Wheelchair USA Website www.mswheelchairusa.org
The Dane Foundation (Nonprofit Sponsor of Ms. Wheelchair USA Pageant and works and services for the Disability Community: The Dane Foundation's Website www.thedanefoundation.org
To donate: http://thedanefoundation.org/eventsprograms/sponsormwusafinalists.html
Select Sarah Tompkins from the list of Sponsors to click for the PayPal Link
TEXT TO DONATE: Dial the numbers 44321 and in the message type MWWUSA for Ms. Wheelchair Washington USA Sarah Tompkins
Connect with Sarita on social media:
LinkedIn: linkedin.com/in/saritakedwards
Twitter: twitter.com/saritaedwards
Instagram: instagram.com/the.real.edwards
Facebook: facebook.com/edwards4real
Follow The E.WE Foundation:
Website: www.theewefoundation.org
Facebook: facebook.com/everyoneiswe
Instagram: instagram.com/everyone.is.we
Twitter: twitter.com/everyoneiswe
LinkedIn: linkedin.com/company/e-wefoundation
Support this podcast: https://anchor.fm/beingrare/support
February is National Parent Leadership Month, dedicated to recognizing the important role of parents and caregivers in their homes and community. Join us as we discuss parent leadership and why it is an important concept to gaining valuable insight into healthcare and community programs benefiting children and families. Today's guests: Molly Martzke and Ebone Kimber
*Sponsored by the E.WE Foundation's LEAP program.
Connect with Sarita: linkedin.com/in/saritakedwards | twitter.com/saritaedwards | facebook.com/edwards4real | instagram.com/therealedwards | sarita@theewefoundation.org
Connect with the E.WE Foundation: www.theewefoundation.org | facebook.com/everyoneiswe | instagram.com/everyone.is.we | twitter.com/everyoneiswe | linkedin.com/company/e-wefoundation
Connect with Molly: Molly Martzke, Senior Program Manager, National Genetics Education and Family Support Center, a division of Expecting Health | https://nationalfamilycenter.org | https://expectinghealth.org | mmartzke@expectinghealth.org
Connect with Ebone: Ebone Kimber, Licensed Master Social Worker, Professional Development with Ebone Kimber | https://www.facebook.com/watch/prodevwithek/ | prodevwithek@gmail.com
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode Sarita talks about being fulfilled. We all take on new projects or tasks with the hope of making something or someone better. But what happens when the projects and tasks no longer fulfill us? Listen as Sarita shares 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode Sarita talks about feeling rushed. The panic of being late can be overwhelming and distracting. Listen to 60 seconds of realizing it is okay to slow down and potentially arrive late..
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode Sarita talks about compromise. At some point we all compromise - from what to eat - to - which movie to watch. Compromise can be healthy but some things are off limits.. Listen as Sarita shares 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode Sarita talks about balance. Life will always toss us some unexpected adventures; but we're in charge of the weight we choose to carry and the weight we choose to let go. Listen as Sarita talks about finding balance.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode Sarita talks about when unexpected things happening. Listen to 60 seconds of Being [unexpectedly] Rare.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about resolutions. The New Year has always been a time for change. The 10-to-1 countdown is the end of someone's "old" and the start of someone's "new". Listen to 60 seconds of Being Rare, resolutions.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about gratitude. Some days gratitude is automatic; other days gratitude seems to be out of reach. Listen to 60 seconds of Being Rare, with gratefulness!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Repod Sarita talks about saying no. With the holidays upon us it's important to know "your" limits. Listen to 60 seconds of Being Rare, on the road!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about emotions and how we're in charge of how we choose to handle them. Listen as she shares 60 seconds of Being Rare, on the road!
Support this podcast: https://anchor.fm/beingrare/support
Holidays aren't "happy times" for everyone. A lot of folks are [still] struggling with pandemic life, especially those juggling rare conditions, medical complexities, and mental health challenges. Be conscious of what you say and how you say it. Be considerate of others and what they may be going through! In this One Minute Monday Sarita talks about making the choice to be kind, to others and yourself. Listen as she shares 60 seconds of Being Rare, with kindness!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about being thankful! Listen as she shares 60 seconds of gratitude for her community, social media tribe, and digital family!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about patience, or the lack thereof, when it comes to the school carline. Listen as she shares 60 seconds of Being Rare with a wheelchair!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about being guarded when it comes to Elijah's care. Listen as she shares 60 seconds of Being Rare.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about embracing differences! Listen as she shares 60 seconds of Being Rare!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about taking the opportunity to showcase the coolness of disability. Listen to 60 seconds of Being Rare.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Tuesday Sarita talks about taking time to rest! Listen as she shares 60 seconds of Being Rare.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about finding a birthday party invite in Elijah's backpack! Listen as she shares her appreciation for his being included.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about being the giver and receiver of support. Listen to 60 seconds of being rare.
Support this podcast: https://anchor.fm/beingrare/support
In this episode Sarita is joined by Licensed Master Social Worker Ebone Kimber to discuss bedside manner or the lack thereof. Listen as Ebone shares strategy nuggets for professionals and families. Join us for more conversation on Wednesday, July 14th at 10:00am, live on Facebook and Zoom. Learn more at theewefoundation.org.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday Sarita talks about Elijah amazing himself with sound! Listen as she shares 60 seconds of being rare.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday, Sarita talks about the relatable journey of being rare. Listen as she shares 60 seconds of being rare.
Support this podcast: https://anchor.fm/beingrare/support
In this special Father's Day episode, Sarita's husband Kareem sits down with John Hart, Dadvocate to Harley, a 5 year old with Full Trisomy 18. Listen as John shares their journey of living with a rare disease.
Support this podcast: https://anchor.fm/beingrare/support
Sarita's husband Kareem takes over Being Rare Studios in a two-part special Father's Day episode. In this episode Kareem sits down with Aaron Ludwig, rare Dadvocate to Mimi, his 3 year old daughter living with Full Trisomy 18. Listen as Aaron shares their Trisomy 18 journey.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Tuesday, Sarita talks about saying no to invites. Listen as she shares 60 seconds of Being Rare.
Support this podcast: https://anchor.fm/beingrare/support
On this One Minute Tuesday episode Sarita talks about expectations from healthcare professionals. Listen as she shares 60 seconds of Being Rare.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday episode, Sarita talks about shifting from resentment to a place of gratitude.
Support this podcast: https://anchor.fm/beingrare/support
In this special Mother's Day edition Sarita sits down with Beverly Jacobson, wife and mom to 9 children. Beverly shares how her faith helped her better accept her daughter's rare diagnosis. Listen as Beverly and Sarita talk about family, faith, and Beverly's new nonprofit, Verity's Village.
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday, Sarita talks about balancing family and self care.
Support this podcast: https://anchor.fm/beingrare/support
In this Mother's Day episode Sarita sits down with Effie Parks, host of Once Upon A Gene Podcast. Effie shares how she started her rare journey with son, Ford and her why behind starting her podcast. Listen as Sarita and Effie talk about finding your people, developmental school for their kiddos, and the power of sharing your story!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Tuesday episode, we talk about feeling isolated and unseen. Listen as we share 60 seconds on relationships!
Support this podcast: https://anchor.fm/beingrare/support
In this special edition Mother's Day episode, Sarita is talking with Allison Bones, President & CEO at T.E.A.M. 4 Travis. Allison shares her journey of extreme loss after losing her husband to cancer and her son to an undiagnosed rare condition. Listen as Allison shares her story!
Support this podcast: https://anchor.fm/beingrare/support
In this One Minute Monday, Sarita talks about the choice of responding or dismissing people's questions and stares. Listen as she shares her truth.
Support this podcast: https://anchor.fm/beingrare/support
In this episode, Sarita shares how sick visits can sometime carry overwhelm and fear. Listen as she shares her truth about fear crippling her faith.
Support this podcast: https://anchor.fm/beingrare/support
In this episode, Sarita talks about the sometimes automatic "death conversation" that comes with taking a rare kiddo to an unplanned doctor's appointment. Listen as she shares her experience with sick appointments!
Support this podcast: https://anchor.fm/beingrare/support
Kareem & Sarita's eldest kid graduated college over the weekend. It was their first public event using Elijah's wheelchair. In this one-minute Monday Sarita shares their experience with using the accessibility entrance for the first time. Listen as she shares 60 seconds of being rare!
Support this podcast: https://anchor.fm/beingrare/support