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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: September, 2024
Sep 22, 2024

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2

Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions?

For parents of children with rare diseases, balancing nutrition while managing symptoms like GERD and eczema can be overwhelming. In this episode, I dive into how we've customized Tess's diet over the years, using scientific research to guide our choices and making practical tweaks to keep her feeling her best.

1. Learn how specific foods, backed by scientific studies, can help manage common symptoms like reflux and inflammation.
2. Discover which simple dietary adjustments can improve digestion and prevent food sensitivities from disrupting daily life.
3. Get practical advice on using nutrient-dense foods and healthy fats to keep your child satisfied and energized longer.

Don’t miss out on these essential tips--play this episode now and start optimizing your child’s diet today!


SCIENCE! 

"Gluten and FODMAP Relationship with Mental Disorders: A Systematic Review" 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8228761/
Aranburu E, Matias S, Simón E, Larretxi I, Martínez O, Bustamante MÁ, Fernández-Gil MDP, Miranda J. Gluten and FODMAPs Relationship with Mental Disorders: Systematic Review. Nutrients. 2021 May 31;13(6):1894. doi: 10.3390/nu13061894. PMID: 34072914; PMCID: PMC8228761.

"Vegan Diet and Dermatology: A Review" 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10531971/
Lee H, Sim N, Fotouhi A, Daveluy S. Vegan Diet in Dermatology: A Review. J Clin Med. 2023 Sep 6;12(18):5800. doi: 10.3390/jcm12185800. PMID: 37762741; PMCID: PMC10531971.

"Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD)" 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11347905/
Khan M, Shah K, Gill SK, Gul N, J JK, Valladares V, Khan LA, Raza M. Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD). Cureus. 2024 Jul 27;16(7):e65552. doi: 10.7759/cureus.65552. PMID: 39192902; PMCID: PMC11347905.

Sep 17, 2024

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2

Have you ever wondered if a simple change in diet could dramatically improve your child’s cognitive function and overall health?

As a parent of a child with a rare genetic disorder, you’ve likely faced numerous challenges in managing their symptoms. This episode shares a real-life story of how a specific diet helped address multiple issues, from eczema to cognitive awareness.

1. Learn about the diet that transformed Tess’s life by improving her skin, GI symptoms, and cognitive engagement.

2. Discover the step-by-step process of eliminating certain foods and the remarkable effects it had on a child with rare disease.

3. Gain practical insights into how dietary changes can positively impact other children facing similar challenges.

Hit play now to hear how a simple dietary adjustment changed everything for Tess and how it could benefit your child’s health too!

Sep 10, 2024

From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your Child

What do you do when people stare at your child with a rare disease? How can you turn that awkward moment into an opportunity for connection?

If you've ever felt uncomfortable or angry when strangers or even loved ones don’t know how to interact with your child, this episode will help you shift your mindset. By assuming good intentions and leading with compassion, you can turn difficult moments into chances to educate and connect.

1. Learn how to handle public interactions when people stare at your child.
2. Discover ways to guide friends and family to better support your child's unique needs.
3. Find out how taking the lead in these situations fosters deeper understanding and inclusion for your child.

Hit play now and learn how to create meaningful connections with both strangers and loved ones when navigating life with a child who has a rare disease.

Sep 3, 2024

Are you looking to get organized and level up your productivity?

With the arrival of autumn, many of us feel the urge to hit the reset button and get our homes and lives back in order. But managing the influx of documents, communications, and daily tasks can be overwhelming, especially for parents balancing the unique challenges of caring for children with rare diseases.

Discover powerful tools to tackle document clutter, so you can regain control over your household.
Learn expert strategies to streamline your communications, making sure nothing slips through the cracks.
Equip yourself with the ultimate organization techniques to stay prepared for whatever life throws your way.

Tune in to this episode now to transform your chaotic fall into a season of calm and productivity!

David Friedman's how-to guide for opting out of snail mail, from his newsletter Ironic Sans. 

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