Being Rare Podcast

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 newbo...

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!

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!

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 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

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 h...

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 y...

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: T...

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: @be...

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,...

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!

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!

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...

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. 

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!

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!

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 dive...

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 Foundati...