R is for Rare

28. LIVMARLI + Rare Liver Conditions ft. Chris Peetz, CEO of Mirum Pharmaceuticals

This week's episode is a very exciting interview with Chris Peetz, CEO of Mirum Pharmaceuticals! Mirum helps create drugs and treatments for rare liver conditions, including Alagille Syndrome, progressive familial intrahepatic cholestasis (PFIC) and biliary atresia. Mirum just had an exciting breakthrough with the approval of their drug LIVMARLI, which treats the chronic itch that many ALGS patients suffer from. Chris and I talked a lot about LIVMARLI and where Mirum is taking this success, the logistics of drug approval overseas, how Chris started at Mirum, and much much more! ------- A little bit more about Chris Peetz: Chris Peetz is a co-founder of Mirum and serves as president and chief executive officer. Chris has been an entrepreneur-in-residence at Frazier Healthcare Partners since May 2017. Prior to joining Mirum, Chris served as the chief executive officer of Flashlight Therapeutics, Inc. From May 2014 to December 2016, he served as chief financial officer and head of corporate development at Tobira, which was acquired by Allergan plc, in November 2016. Prior to joining Tobira, Chris served as vice president, finance and corporate development of Jennerex Biotherapeutics. Prior to Jennerex, Chris held various positions at Onyx Pharmaceuticals, Inc. (now Amgen Inc.), including corporate strategy, marketing, product lifecycle management, and financial planning. Prior to Onyx, Chris provided merger and acquisition advisory services at LaSalle Corporate Finance, a part of ABN AMRO, and held positions at Abgenix Inc. and Solazyme Inc. He also serves as a member of the board of directors of Alpine Immune Sciences, Inc., a public immunotherapy company, since April 2018. Chris received an M.B.A. from Stanford Graduate School of Business and a B.S.B.A. in Finance, International Business and French from Washington University in St. Louis. ------- Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! Follow me on Instagram -- https://www.instagram.com/risforrarepodcast/?hl=en Questions? Want to be a guest on the podcast? Email me: risforrarepodcast@gmail.com 

27. Rare Disease Advocacy and Podcasting ft. Shivani Vyas, Founder and Host of The Rare Disorder Podcast

After a few month hiatus (due to the craziness of senior year), this week’s episode is a new and very exciting rare disease podcast crossover episode! I was featured on The Rare Disorder Podcast back in September, and this is my interview with Shivani for R is for Rare! Shivani Vyas is a high school student, and the Founder and Host of The Rare Disorder Podcast, a podcast dedicated to spreading awareness for rare diseases and elevating the voices of those affected by them. Her personal connection to the community traces back to her grandmother, who was affected by a rare pancreatic cancer. Shivani started The Rare Disorder Podcast in March 2020, and today, she cross-podcasts, speaks at conferences, involves herself in research, and advocates for legislation through Young Adults for RDLA (Rare Disease Legislative Advocates) to pay tribute to her grandmother...a true rising star in our community. Outside of school, Shivani loves to spend time with friends, hike, explore the outdoors, and volunteer in her community. She hopes to study public health, public policy, and/or neuroscience in college next year. Shivani and I talk about location and rare disease treatments, how Instagram can be a unifying force, how she got into rare disease advocacy, and much much more! SUBSCRIBE to R is For Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast ! Shivani’s Links: Listen to The Rare Disorder Podcast on Spotify: https://open.spotify.com/show/1rNodLuZ2cgUlAw77rYWJN?si=Kdy3Uyy_SRKDYKjxKXfOBw&dl_branch=1 Follow The Rare Disorder Podcast on Instagram: http://instagram.com/therdpodcast Check out other platforms & initiatives: https://linktr.ee/theraredisorderpodcast Follow Shivani on Instagram: https://www.instagram.com/shivivyy/

26. 2q37 Deletion Syndrome ft. Megan Freeman

This week's interview is with Megan Freeman, a greeting card creator and rare disease advocate! She has a very rare chromosomal disorder called 2q37 Deletion Syndrome, which causes delays in growth and development. For Megan, she didn't experience puberty until her late teens; she is also 1 of around 150 people with this disease. Megan and I discuss mental health as a rare disease patient, dating with a rare disease, all things advocacy, and much more! Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, Overcast, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast for more rare disease and disability content! Follow Megan Freeman on Instagram - @cardc.urator

25. Median Arcuate Ligament Syndrome (and much more) ft. Brenna Jones

This week’s interview is with Brenna Jones, who is a bookworm, Instagrammer, and teenage rare disease and disability advocate! She has many conditions, but the main rare disease we focus on throughout the episode is Median Arcuate Ligament Syndrome, or MALS. Brenna also has hypermobile Ehlers-Danlos Syndomre, POTS, New Daily Persistent Headache (NDPH), May-Thurner Syndrome, and Thoracic outlet syndrome. MALS is a rare disease that affects the celiac artery, which in turn causes GI and digestive issues. Brenna and I talk about academic accommodations with rare diseases/disabilities, comparison, vaccines, books and TV shows, and much more!! Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And let me know what you think of the podcast by leaving a review (it’s free)! Follow me on Instagram - https://www.instagram.com/risforrarepodcast/ Follow Brenna on Instagram - https://www.instagram.com/chronicallybrenna/ Brenna’s Beacons page - https://beacons.page/chronicallybrenna/ Follow Brenna on TikTok - https://www.tiktok.com/@chronicallybrenna? Follow Brenna on Twitter - https://twitter.com/chronicallybren/

24. Fibrodysplasia Ossificans Progressiva (FOP) ft. Joey Suchanek

***TW: Joey very briefly discusses suicide in the second half of the episode. Nothing graphic, but it is brought up*** This week's interview is with Joey Suchanek (@joeysooch on Instagram), who is an aspiring influencer with a very rare, genetic disorder called FOP; FOP stands for Fibrodysplasia Ossificans Progressiva. FOP is a rare disease in which a person's muscles, tendons and ligaments turn into bone via flares. Joey and I discuss what makes the rare disease community unique, various ways to view beauty standards in social media, and much more! Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast! Joey Suchanek on Instagram -- @joeysooch Joey's YouTube - https://www.youtube.com/channel/UCjTeVF_oFCSJSslY9MkXPMQ