1. intro: welcome to Rare with Flair!

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Hi, hello, hey, and welcome to Rare with Flair!

Chances are, if you’re reading this when we released it, you’re one of our family, friends, or followers from other platforms. Whether you only know one of us, a bit of both, or none at all, we wanted to take the time to share who we are and what we’re about with a fun intro episode!

We’ve have had a blast since the end of June putting together this podcast, from the concept to the art to the podcast itself. In this time of semi-solitude we’ve all been experiencing, this little dream has been a light in our lives, and we hope it will continue to be a light in yours.

show notes:

• We recorded this episode on July 26, 2020, which was also the 30th anniversary of the Americans with Disabilities Act!
• Yes, we did record this episode twice! Like Casey said, we recorded everything… but on the wrong microphone. Whoops. After a good bit of troubleshooting, and with some major help from Casey’s Facebook group on voiceovering, we got it going!
• Casey mentions her passion for lacking disability representation in media. It’s a serious issue, and if you’ve never considered it before, check out this Huffpost article on lacking disability representation.
• Cassandra mentions her passion for accessibility in tech. Many people have never had to think about how people with disabilities use the internet, but here’s some info on what digital accessibility is and why it matters.
• Cassandra talks about her guide dog Romana and mentions Guide Dogs for the Blind, where they met nearly four years ago!
• We break down the characteristics of Hermansky-Pudlak Syndrome, the rare disease we both have.
  • Casey mentions the funky shape of our blood platelets. To see what that looks like, see HPS platelet cookie visual.
  • Cassandra mentions “Celeste,” or her total colectomy (“poop in a bag”). To understand how that works, see Mayo Clinic’s description of a total colectomy (ileostomy).
  • Cassandra makes a shameless plug for the HPS Nework. To donate to help fund research for lung disease among other things, go to the HPS Network’s donate page.
  • Cassandra mentions lung transplants for people with HPS pulmonary fibrosis.
• Casey mentions the HPS Conference.
• Cassandra mentions Casey’s Doc Marten shoes (not sponsored)
• Case IS the nicest human, and Cass stands by that 😉
• We rave about the enneagram personality typing. Cassandra is an enneagram type 8 (“The Challenger”) with wing 7 (combo called “The Maverick”). Casey is an enneagram type 2 (“The Helper”) with wing 1 (combo called “The Servant”).
• We get to Casey’s Youtube channel! Be sure to like and subscribe!
• Cassandra talks about her advocacy writings:
  • First, she mentions the National Organization for Albinism and Hypopigmentation and their quarterly magazine, Albinism InSight.
  • Then mentions Cassandra’s personal blog.
  • She also describes Girls with Guts, the nonprofit for women with bowel disease and ostomies.
  • Finally, she mentions Rick Guidotti and Positive Exposure, referencing The PEARLS Project.
• Finally, we play a fun get-to-know-you game!
  • Casey mentions fake service dogs (Vice article), which give a bad name to real service dog handlers!
  • Cassandra says Puerto Rico has gotten the short end of the stick, so here’s an Atlantic article on Puerto Rico’s historic struggle (not including the pandemic). (Cassandra is Puerto Rican and still has family on the island).
  • Casey mentions orientation & mobility, which is how blind & low vision people learn navigation skills.
  • Cassandra jokes about how Nuetragena’s sunscreen is the best (not sponsored)
• Cover art designed by Sara Wilkinson. Follow Sara on instagram to see her other art!