Subscribe
Rare Like Us with Taylor Kane

Once Upon A Gene

Rare Like Us with Taylor Kane

ONCE UPON A GENE - EPISODE 038
July 9, 2020

Rare Like Us with Taylor Kane

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

15th Annual Podcast Awards

https://www.podcastawards.com/

The Disorder Channel

https://www.thedisordercollection.com/

Disorder: The Rare Disease Film Festival

https://www.rarediseasefilmfestival.com/

WEGO Health Award Nomination

https://www.wegohealth.com/Taylor3/awards

Remember The Girls PayPal Giving Fund

https://www.paypal.com/us/fundraiser/charity/2806211

CONNECT WITH TAYLOR KANE

Remember The Girls

https://www.rememberthegirls.org/

Blog 

https://www.rememberthegirls.org/blog

Facebook

https://www.facebook.com/remembergirls/

Instagram

https://www.instagram.com/rememberthegirls/

Twitter

https://twitter.com/remember_girls

TUNE INTO THE ONCE UPON A GENE PODCAST

Spotify

Apple Podcasts

Stitcher

Overcast

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene

Instagram

https://www.instagram.com/onceuponagene.podcast/?hl=en

Built Ford Tough Facebook Group

https://www.facebook.com/groups/1877643259173346/

You may also like

Top Health Podcasts. Delivered to Your Inbox and Eardrums.

Proudly supported by:

cover
How Can Healthcare Workers Care for Themselves and Colleagues During Times of Grief Part 2 of 2: Practical Tools and Methods to Help Process Loss