Noonan Syndrome: Navigating the Challenges and Celebrating the Victories

Noonan Syndrome: Navigating the Challenges and Celebrating the Victories

Join mother-daughter duo, Angie and Shawna, as they share personal experiences of navigating life when someone you love gets diagnosed with Noonan Syndrome in "Noonan Syndrome: Navigating the Challenges and Celebrating the Victories." With Snow, Shawna's daughter, living with the genetic disorder, the hosts explore the ups and downs of diagnosis, treatment, lifestyle, advocacy, and more. Tune in for a supportive and informative podcast that highlights the victories and joys of living with Noonan Syndrome.

Episodes

July 7, 2023 12 mins

Join us for the final episode of our first season as we discuss the importance of advocacy for children with Noonan Syndrome, provide answers to some pressing questions, and reflect on our journey so far. Shawna and I share personal updates, look ahead to next season's focus on RASopathies, and spotlight the incredible families from our SHOC2 episode.

In our Q&A segment, we address topics like ongoing research on Noonan Syn...

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Join us as we tell you about some amazing children living with SHOC2 in this special episode of the Noonan Syndrome Podcast.

In this captivating journey, we invite you to meet five extraordinary families who have embraced the challenges and triumphs that come with raising a child diagnosed with SHOC2. Each child's story is a testament to the strength, resilience, and boundless love that define their families.

Prepare to be ins...

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"Join us in this deeply moving episode as we navigate through the incredible life story of Katie, a woman living courageously with Noonan Syndrome, specifically the SHOC2 gene mutation. From her early diagnosis to her struggles and triumphs in school and her foray into the workforce, we explore how Katie defied expectations every step of the way. We'll share her experience of tasting food for the first time, a small victo...

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In this week's episode, we shine a spotlight on a groundbreaking study that has caught our attention. Join us as we dive into the details and share some exciting news.

This study, published last year, has the potential to revolutionize our understanding of Noonan Syndrome. We'll discuss its findings and how they have the potential to impact diagnosis and treatment strategies.

But that's not all—we have big news to sha...

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In this episode, we explore the various tools and devices that can support the development and daily lives of children with Noonan Syndrome. We discuss the importance of adaptive equipment and how it can help address specific challenges in areas such as gross motor skills, fine motor skills, sensory processing, and communication. Join us as we delve into the world of adaptive equipment and provide valuable insights and practical ad...
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In this episode of our Noonan Syndrome podcast, Angie takes the reins and flies solo as her usual co-host, Shawna, is unfortunately under the weather. But the show must go on! Today, Angie talks about an important topic for parents and caregivers of children with Noonan Syndrome - self-care. Caring for a child with Noonan Syndrome can be physically and emotionally demanding, and it's easy to neglect your own needs and well-bein...

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In this week's episode of our podcast about Noonan Syndrome, co-hosts Shawna and Angie discussed the importance of early intervention and support for individuals and families affected by the condition. Drawing on personal experiences, Shawna shared candid insights into her daughter Snow's education and the challenges she faced navigating the healthcare system. The episode offers a valuable perspective on the issues facing ...

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In this podcast episode, the hosts explore the genetic basis of Noonan Syndrome, a rare genetic disorder affecting multiple body systems. They discuss the role of gene mutations in causing the disorder, the physical and developmental symptoms associated with it, and the importance of early diagnosis and tailored treatment strategies. Additionally, they highlight the challenges and victories of living with Noonan Syndrome and the im...

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In this week's episode of "Noonan Syndrome: Navigating the Challenges and Celebrating the Victories," we get to know Snow, a 6-year-old girl who attends kindergarten and lives with Noonan Syndrome. Snow shares her experiences, interests, and unique perspectives on life, providing a heartwarming and informative interview for listeners to enjoy. Don't miss this special episode.

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April 7, 2023 16 mins

In this episode of "Noonan Syndrome: Navigating the Challenges and Celebrating the Victories," host Angie explores strategies for raising awareness about Noonan Syndrome and promoting understanding and acceptance of this rare genetic condition. She discusses the importance of raising awareness, specific strategies for doing so, and the power of advocacy and collaboration in promoting research and support for individuals w...

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March 31, 2023 16 mins

Join co-hosts Angie and Shawna as they explore the world of coping mechanisms for children with Noonan Syndrome. This genetic disorder can present unique challenges for families, but with the right tools and support, children with Noonan Syndrome can thrive. From mindfulness techniques to routines, the hosts share their personal experiences and expert advice to help parents and caregivers provide a safe and calm environment for t...

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March 24, 2023 13 mins

In this podcast episode, Shawna and Angie, Snow's mother and grandmother, respectively, discuss the various treatments and therapies that have been recommended for Snow, who lives with Noonan Syndrome. They share their own experiences and insights on what has worked well for Snow, including her heart catheterization procedure to treat congenital pulmonary valve stenosis, physical therapy to address physical challenges, and occ...

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March 17, 2023 8 mins

Parents who have a child with Noonan Syndrome know all too well that plans can change, and very last minute. Well, this week has been one of those weeks.

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March 10, 2023 10 mins

In this short episode of "Season 1: Noonan Syndrome: Navigating the Challenges and Celebrating the Victories", co-hosts Angie and Shawna share their personal experiences with Noonan Syndrome, a genetic disorder that affects about 1 in 2,500 people. They discuss the challenges and emotions involved in receiving the diagnosis and the medical tests and evaluations involved in the process. They also highlight some of the physical chara...

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