Being Rare Podcast

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.

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.

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!

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 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!

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 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!

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!

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!

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!

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!

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. 

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! 

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

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.

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.

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.

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 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.

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!

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!

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.

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

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.

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

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!

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