96: Sturge Weber Dad- Evan C.

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In this episode, host Jay is joined by guest Evan to discuss various topics related to parenting and rare diseases. They talk about the challenges of raising girls, the impact of COVID-19 on education, and the difficulties of finding funding for rare diseases like Sturge-Weber syndrome. They also touch on the profit motives in the medical industry and the importance of seeking third-party perspectives. The conversation concludes with a discussion about personal experiences with rare diseases and the need for preventative medicine. In this conversation, Jey and Evan discuss their Christmas traditions and compare the differences between Australian and American celebrations. They also talk about Boxing Day and how it is celebrated in Australia. They reflect on their journey as podcasters and the impact they hope to make in the lives of others. Evan shares his core values and what grounds him during difficult times. They end the conversation by discussing resources for Sturge Weber Syndrome, a condition Evan's daughter has.

Takeaways

Raising girls can be challenging, especially as they grow older and develop their own attitudes and opinions.
The COVID-19 pandemic has disrupted education systems worldwide, causing delays and challenges for students.
Rare diseases like Sturge-Weber syndrome often receive less funding and research attention due to their low prevalence.
The medical industry is driven by profit motives, which can sometimes hinder the development of cures and preventative treatments.
Seeking third-party perspectives and opinions can provide valuable insights and help navigate complex situations. Christmas traditions vary between countries and even between families, but the focus is often on spending time with loved ones and enjoying good food.
Boxing Day is a popular holiday in Australia and is often celebrated with cricket matches and sales.
It is important to find grounding and perspective during challenging times by focusing on what truly matters and not sweating the small stuff.
Resources such as the Sturge-Weber Foundation and the Vascular Malformation Foundation provide valuable information and support for those affected by Sturge Weber Syndrome.

Chapters

00:00 Introduction and Episode Teaser
01:02 Reunion with Guest Evan
03:05 Evan's Life and Daughter's Condition
05:00 Parenting Challenges and Growing Up
06:17 The Challenges of Raising Girls
07:45 School and Homework
09:06 Education Challenges During COVID-19
10:38 Different School Systems
12:09 Challenges and Progress with Sturge-Weber Syndrome
13:42 Cognition and Social Skills
15:23 Vision Issues and Experimental Surgery
16:52 Medical Treatments and Funding
21:25 The Importance of Third-Party Perspectives
24:09 Lack of Funding for Rare Diseases
25:54 Potential Future Treatments
28:26 Lack of Financial Incentive for Cures
31:10 Personal Experience with Rare Diseases
33:12 Preventative Medicine and Profit Motives
35:45 The Business of Medicine
38:15 Treating Illnesses at Home
40:27 Taking Care of Sick Children
41:21 Asking for Forgiveness, Not Permission
41:48 Evan's Motorbike Purchase
43:00 Conclusion
45:00 Australian Christmas
48:30 Boxing Day
51:32 Looking Ahead
56:41 Roots and Core Values
58:57 Finding Grounding
01:01:32 Advice for Someone in a Dark Place
01:03:29 Resources for Sturge Weber Syndrome

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