『Our Side of Rare』のカバーアート

Our Side of Rare

Our Side of Rare

著者: Angie Schaeffer - Shawna Bailey
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Our Side of Rare is a warm, honest conversation about the family side of living with rare. Mother-and-daughter hosts Angie and Shawna share two generations of perspective shaped by their family’s journey with Noonan syndrome. Shawna speaks as the mother of a child with Noonan syndrome, while Angie shares the view from beside them as a mother and grandmother. Together, they talk about diagnoses, doctors, surgeries, school, advocacy, caregiving, family relationships, hard days, funny moments, meaningful milestones and the victories worth celebrating. This is the next chapter of Noonan SyndromAngie Schaeffer - Shawna Bailey 衛生・健康的な生活
エピソード
  • Season 1 Finale - Reflections, Q&A, and Next Steps
    2023/07/07

    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 Syndrome at Stanford School of Medicine, dealing with unresponsive pediatricians regarding growth hormones, and communicating with educators unfamiliar with Noonan Syndrome.

    Teachers Guide: https://noonansyndrome.com.au/wp-content/uploads/2016/10/NSAA-Teaching-Strategies-for-NS.pdf

    - Stanford School of Medicine - Noonan Syndrome Research Study: [Link Here](https://web.stanford.edu/group/bridgelab/project/ns_study/)

    We also provide helpful strategies for parents on advocating for their Noonan Syndrome child, which is vital for their well-being and growth.

    During our hiatus, stay tuned for a special podcast episode featuring a Peace Corp Member from Alabama, stationed in Eswatini, sharing their unique experiences.

    As we prepare for the next season, our website will undergo some exciting changes, and our YouTube channel will see more updates. Keep an eye on our Etsy shop too, as we roll out new T-shirts and more soon.

    This season has been an incredible journey, and we couldn't have done it without you, our listeners. Your support fuels our mission, and we look forward to joining you again in the next season for more engaging conversations.

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    13 分
  • Embracing the Journey: Living with NS-SHOC2
    2023/06/09

    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 inspired as we celebrate the indomitable spirit of these remarkable children. Their stories remind us of the power of resilience, the importance of support networks, and the beauty of finding joy in every moment, no matter the circumstances.

    Tune in to the Noonan Syndrome Podcast and embark on a powerful exploration of the lives of these incredible children living with SHOC2. Get ready to be moved, enlightened, and uplifted as we shine a light on their journeys and the love that guides them every step of the way.

    Schaeffer, A., & Bailey, S. (2023). Shining a light on Noonan Syndrome. Noonan Syndrome Podcast. https://noonansyndromepodcast.my.canva.site/

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    37 分
  • Unmasking SHOC2: A Triumph Over Noonan Syndrome
    2023/05/26

    "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 victory that represented so much more. Learn how Katie became a beacon of hope, advocating tirelessly for families affected by rare diseases. We'll also delve into the science behind the SHOC2 mutation, seeking to shed light on this 'most common rare disease you've never heard of.' Tune in to honor Katie's journey and draw inspiration from her resilience, determination, and ceaseless optimism." WalesOnline. (2023). I never expected a normal life - but I've proved everyone wrong. Retrieved May 20, 2023, from https://www.walesonline.co.uk/news/wales-news/i-never-expected-normal-life-23452345?utm_source=linkCopy&utm_medium=social&utm_campaign=sharebar Schaeffer, A., & Bailey, S. (2023). Shining a light on Noonan Syndrome. Noonan Syndrome Podcast. https://noonansyndromepodcast.my.canva.site/

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    21 分
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