Episode 38

Rare Like Us with Taylor Kane

Jul 9, 2020

37:10

Caregiver Support Genetics & Genomics Rare Disease

Episode Description

ANNOUNCEMENTS

Don't forget to register for the NORD 2020 Living Rare, Living Stronger Patient and Family Forum streaming July 18th-19th. I'll be on the parent panel on the 19th talking about stress reduction and caregiver well being. Register here.

Head over to podcastawards.com and nominate Once Upon a Gene for The People's Choice Award under the Society-Culture category.

Disorder: The Rare Disease Film Festival was supposed to be held in May and was cancelled due to COVID. These films are important in connecting families and researchers across the world. Bo Bigelow and Daniel DeFabio, the founders of the film festival, launched The Disorder Channel. It's available for free on Roku and Amazon Fire.

I discovered the passionate and driven Taylor Kane through the book she wrote called Rare Like Us, a memoir about her loving father dying from a rare disorder called Adrenoleukodystrophy (ALD). It's an incredible story and captures the insurmountable obstacles families in the rare disease community face. She is also the founder of Remember The Girls, an international nonprofit organization that unites, educates and empowers female carriers of x-linked genetic disorders. She's recently been nominated for an award in the category of patient leader hero. You can endorse her nomination here.

EPISODE HIGHLIGHTS

When did you decide to write Rare Like Us?

Can you tell us about your dad's diagnosis?

What does it mean to be a carrier of ALD?

A big part of your organization is creating community and having strength in numbers. What are some other goals you have for the organization?

What are you most proud of with Remember The Girls?

What can people do to help your cause?

LINKS AND RESOURCES MENTIONED

NORD Living Rare, Living Stronger 2020 Registration

https://rarediseases.org/living-rare-forum/

Rare Like Us

https://www.amazon.com/Rare-Like-Us-Finding-Plagued/dp/1543978819