Being Rare 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!

03-20

01:10

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!

03-13

01:14

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!

03-06

01:09

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

02-28

02:07:09

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!

02-27

01:04

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!

02-21

01:05

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!

02-07

01:09

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

02-01

37:10

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!

01-30

00:59

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!

01-23

01:04

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!

01-09

01:04

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.

01-03

00:51

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!

11-21

01:07

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

11-18

31:11

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