Podcasts Culture Once Upon A Gene Rare Like Us with Taylor Kane

Rare Like Us with Taylor Kane

Published: July 9, 2020, 11 a.m.

ANNOUNCEMENTS\nDon'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.\xa0\nHead over to podcastawards.com and nominate Once Upon a Gene for The People's Choice Award under the Society-Culture category.\nDisorder: 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.\xa0\nI 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.\xa0\n\nEPISODE HIGHLIGHTS\nWhen did you decide to write Rare Like Us?\nCan you tell us about your dad's diagnosis?\nWhat does it mean to be a carrier of ALD?\nA big part of your organization is creating community and having strength in numbers. What are some other goals you have for the organization?\nWhat are you most proud of with Remember The Girls?\nWhat can people do to help your cause?\n\nLINKS AND RESOURCES MENTIONED\nNORD Living Rare, Living Stronger 2020 Registration\nhttps://rarediseases.org/living-rare-forum/\n Rare Like Us\n https://www.amazon.com/Rare-Like-Us-Finding-Plagued/dp/1543978819\n15th Annual Podcast Awards\nhttps://www.podcastawards.com/\nThe Disorder Channel\nhttps://www.thedisordercollection.com/\nDisorder: The Rare Disease Film Festival\nhttps://www.rarediseasefilmfestival.com/\nWEGO Health Award Nomination\nhttps://www.wegohealth.com/Taylor3/awards\nRemember The Girls PayPal Giving Fund\nhttps://www.paypal.com/us/fundraiser/charity/2806211\n\nCONNECT WITH TAYLOR KANE\nRemember The Girls\nhttps://www.rememberthegirls.org/\nBlog\xa0\nhttps://www.rememberthegirls.org/blog\nFacebook\nhttps://www.facebook.com/remembergirls/\nInstagram\nhttps://www.instagram.com/rememberthegirls/\nTwitter\nhttps://twitter.com/remember_girls\n\nTUNE INTO THE ONCE UPON A GENE PODCAST\nSpotify\n Apple Podcasts\nStitcher\nOvercast\nCONNECT WITH EFFIE PARKS\nWebsite\nhttps://effieparks.com/\nTwitter\nhttps://twitter.com/OnceUponAGene\nInstagram\n https://www.instagram.com/onceuponagene.podcast/?hl=en\nBuilt Ford Tough Facebook Group\nhttps://www.facebook.com/groups/1877643259173346/