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 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!

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 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

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.

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.

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

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, 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

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 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

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

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!

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..

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!

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.

In this One Minute Monday episode Sarita talks about when unexpected things happening. Listen to 60 seconds of Being [unexpectedly] Rare.

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.

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!

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!

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!

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!

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!

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!

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.

In this One Minute Monday Sarita talks about embracing differences! Listen as she shares 60 seconds of Being Rare!

In this One Minute Monday Sarita talks about taking the opportunity to showcase the coolness of disability. Listen to 60 seconds of Being Rare.

In this One Minute Tuesday Sarita talks about taking time to rest! Listen as she shares 60 seconds of Being Rare.

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.

In this One Minute Monday Sarita talks about being the giver and receiver of support. Listen to 60 seconds of being rare.

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.

In this One Minute Monday Sarita talks about Elijah amazing himself with sound! Listen as she shares 60 seconds of being rare.

In this One Minute Monday, Sarita talks about the relatable journey of being rare. Listen as she shares 60 seconds of being rare.

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.

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.

In this One Minute Tuesday, Sarita talks about saying no to invites. Listen as she shares 60 seconds of Being Rare.

On this One Minute Tuesday episode Sarita talks about expectations from healthcare professionals. Listen as she shares 60 seconds of Being Rare.

In this One Minute Monday episode, Sarita talks about shifting from resentment to a place of gratitude.

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.

In this One Minute Monday, Sarita talks about balancing family and self care.

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!

In this One Minute Tuesday episode, we talk about feeling isolated and unseen. Listen as we share 60 seconds on relationships!

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!

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.

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.

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!

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!