Rare and Real

Ep. 5: Getting Creative w Mary - SEASON 1 FINALE

For the final episode of the 2025 Rare & Real season, co-hosts Nate Milam II and Carter Hemion turn the mic inward, welcoming a voice listeners don't hear often, but feel everywhere: SOS Creative Director, Mary Aufuldish. From the logo to the Rare & Real podcast branding, merch designs, and visual storytelling, Mary is the creative force behind the look and feel of Stripes of Solidarity. In this heartfelt and candid conversation, Mary shares what it’s been like stepping into the rare disease space, learning alongside the community, and using her creativity to support a mission rooted in advocacy, equity, and real impact. As a longtime friend of Nate, long before SOS ever existed, Mary reflects on the personal journey of blending friendship and creative collaboration. This episode is a love letter to behind-the-scenes work, chosen family, and the power of creativity in movement-building. It’s a reminder that advocacy also lives in design and the people who help bring a vision to life. Tune in as we close out the 2025 season of Rare & Real by celebrating creativity and the people who make this work possible. Happy New Year!!!

4. Brinda's RDD Journey

Happy Histiocytosis Awareness Month! In this powerful September episode of Rare & Real, we sit down with histio patient and advocate, Brinda Shukla (she/her), a medical student and rare disease champion living with Rosai-Dorfman Disease (RDD), to explore her journey of resilience, identity, and purpose. Brinda shares her experience navigating treatment as a teenager, the mental health toll of living with a rare condition, and the challenges of transitioning from pediatric to adult care. She opens up about learning to own her diagnosis, finding healing through therapy and community, and how her rare disease experience shaped her path to medical school. We also talk about the liberating moment of being ready to share her story, the power of music and connection, and what “being rare” really means to her. Brinda’s story is a reminder that rare disease journeys are about more than charts and scans—they’re about humanity, resilience, and building a future of better care. Whether you’re part of the rare disease community, an aspiring healthcare professional, or just someone who loves hearing real stories of strength and authenticity, this conversation will inspire you.Favorite Artist: Ariana Grande A quote/lyric that resonates: "Tine makes you bolder." - Landslide by Fleetwood Mack

3. Back to School

Episode 3 — Back to School: Rare Diseases, Accommodations & Finding Your Voice Back-to-school season brings excitement for some—but for students living with rare diseases, it often comes with a unique set of challenges. In this episode of Rare & Real, Nate Milam II and co-host Carter Hemion open up about their deeply personal experiences navigating school while living with chronic illness, late diagnoses, and disabilities. From 504 plans and bathroom passes to missed classes, misdiagnoses, and self-advocacy, we unpack what it’s like to balance learning, health, and identity in a system that isn’t always built for us. We also reflect on the resilience it takes to fight for accommodations, the exhaustion that comes with managing your health while trying to fit in, and why conversations about accessibility in education are long overdue. Whether you’re a rare disease patient, parent, educator, or advocate, this episode sheds light on the untold stories behind school hallways and highlights why every student deserves the chance to succeed—without having to fight for it. Listen now and join the conversation about how we can create more inclusive, supportive environments for rare disease patients in education.

2. Coming Out...Again

What is it like when you have to “come out” more than once—about who you love and about the rare disease that changes your life?  Coming out isn’t just about sexuality—it can happen in every part of the journey, especially when your health or identity challenges the norm. In this episode of Rare & Real, Nate and Carter dive into the unexpected ways queer and rare disease communities share similar struggles: feeling unseen, constantly having to “explain” who you are, and fighting for care and respect. Through personal stories and real talk, they explore what it means to come out as queer and as someone living with a rare condition, including the tough conversations with doctors, the power of self-advocacy, and the freedom that comes from owning your truth. Whether you’re part of the LGBTQIA+ community, navigating a rare disease, or simply curious about the intersection of identity and healthcare, this conversation will leave you informed, inspired, and thinking differently about what it means to truly be seen.

1. Pilot - We're Here, We're Queer, We're Rare

Episode 1: Pilot-We’re Here, We’re Queer, We’re Rare *There are about 300 MILLION people impacted by rare disease globally, not 300!* Welcome to the very first episode of Rare & Real, where we bring the bold truth of queerness and rare disease into the light—unapologetically. In this premiere, your hosts Nate Milam II and Carter Hemion introduce you to the heart of Rare & Real and the movement behind it: Stripes of Solidarity. Together, they open up about their personal journeys with rare disease—Hemophagocytic Lymphohistiocytosis (HLH) and classical Ehlers-Danlos syndrome (EDS)—and how those experiences shaped their identities, advocacy, and why this platform exists. They dive into: * What a rare disease actually is—and why most have no treatment * The isolation and misdiagnosis that come with being rare * What it means to be queer and a patient navigating healthcare systems that weren’t built with you in mind * The importance of safe, intersectional spaces in advocacy * Why Stripes of Solidarity is a call to action You’ll also hear reflections on Pride, imposter syndrome in the advocacy space, and how even joy can coexist with pain in the lives of rare disease patients. Whether you’re queer, rare, both, or a caring ally—this is your invitation to belong, to listen deeply, and to help us change the narrative. Join the movement. We see you. We’re with you. Happy Pride. Instagram: @_rareandreal LinkedIn, Facebook, & YouTube: Stripes of Solidarity www.stripesofsolidarity.org [https://stripesofsolidarity.org/]