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Stronger Every Day: For Parents of Children with Rare Diseases

You're a parent or caretaker of someone with a rare disease. It's crazy hard, but you can handle all the challenges that come your way, and Bo Bigelow will show you how.  Bo Bigelow is the father and primary caretaker of Tess, age 14, who has a rare genetic disorder that causes nonverbal autism, communication disorders, and epilepsy. Bo is an award-winning speaker, writer, filmmaker, and advocate for people with disabilities. He is also a practicing disability-rights attorney. Whether speaking up for Tess's education, navigating appointments and insurance coverage, or simply making Tess seen and known, he's developed tons of actionable tips to help you crush it and get it all done, without losing your own sanity and identity.   Bo is a co-founder of DISORDER: The Rare Disease Film Festival and The Disorder Channel. Over the years, he's told Tess's story to NPR, NBC News, ABC News, The Washington Post, and The Atlantic.
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Stronger Every Day: For Parents of Children with Rare Diseases
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Now displaying: August, 2024
Aug 27, 2024

Empowering the Neurotypical Sibling

Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease?

This episode dives into how you can shift your mindset to see the hidden benefits your neurotypical child gains from growing up alongside a sibling with a rare condition, helping you address the common concerns of feeling overwhelmed or guilty.

  1. Learn how to reframe challenges into growth opportunities for your neurotypical child.
  2. Be a sturdy parent, as Dr. Becky Kennedy describes in her excellent parenting book Good Inside
  3. Discover the "carve out" technique to ensure your neurotypical child receives the attention and experiences they need to thrive.
  4. Understand the long-term emotional intelligence and resilience your child develops in this unique family dynamic.

Don't miss out—press play now and give your neurotypical child the gift of emotional growth and resilience today!

Aug 17, 2024

Quick update about Miss Tess and her adventures at summer camp. 

Aug 17, 2024

How could you change your mindset about taking your child with a rare disease to the doctor?

Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others.

1. Enlist two types of co-pilots for visits to make sure you don't miss anything.

2. Trust yourself, since you know your child better than anyone.

3. Hear from Harvard-educated pediatrician Dr. Bell about the best ways to help your doctor help you.

Tune in now to gain these actionable tips to make the most of doctor visits! 

Aug 6, 2024

Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor?

Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode tackles practical strategies to streamline these visits, ensuring your child's needs are met without leaving you completely drained.

1. Discover simple, time-saving tips you can implement from home to reduce stress and make doctor visits smoother.
2, Learn about a vital tool that will keep everyone informed and aligned on your child's medical care, simplifying communication.
3. Find out how to enlist a key partner who can help you navigate the complexities of medical care, ensuring no detail is overlooked.

Listen now to gain these essential tips and partner insights, and make your next doctor visit less stressful and more efficient!

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