For over a decade, Kerry has been active in the arthritis, sarcoidosis, and rare disease communities, sharing her experience and insight to advocate, educate, and support patients and their loved ones. A self-proclaimed “buttahfly,” Kerry recounts her disease-inspired transformations through her column, Float Like a Buttahfly, and amplifies other patient voices through her book, Kaleidoscope: Rare Disease Stories. Kerry volunteers with several organizations and serves on the Bionews Patient Advisory Board. Her goal is to help others in the rare, disabled, and chronic illness communities feel seen, validated, and empowered.

Mai ElMallah is a pediatric pulmonologist and physician-scientist whose work bridges clinical care and translational research in neuromuscular and respiratory disease. She serves as the Division Chief for Duke Pediatric Pulmonary & Sleep Medicine and is deeply committed to improving respiratory outcomes for children. She is the co-Director of the Duke Pediatric Neuromuscular Clinic where she cares for patients with respiratory complications of neuromuscular disorders. She also leads a translational lab which studies the impact of novel therapies on breathing in neuromuscular disorders.

Tanita Allen is a writer, speaker, and patient advocate living with Huntington’s Disease News, where she authors her column, HD in Color, a platform dedicated to expanding how we talk about Huntington’s disease, identity, and visibility. She is the author of We Exist, a memoir that chronicles her deeply personal journey to diagnosis, including the racial bias and disbelief she faced in medical settings, and her determination to ensure that people who are overlooked, dismissed, or stereotyped are seen, heard, and taken seriously. Her advocacy and storytelling have been recognized beyond the rare-disease community; she has been featured in Forbes and Brain & Life, and she has delivered keynote talks and speaking engagements that center health equity, patient dignity, and what it truly means to thrive while living with a progressive neurological condition.

Currently, Tanita is a graduate student studying Health and Wellness Coaching at Notre Dame of Maryland University. Her work sits at the intersection of coaching, lived experience, and community care. She is passionate about helping people with chronic illness build lives that still feel like theirs, lives rooted in self-advocacy, sustainable routines, mindset support, emotional resilience, and practical tools for navigating healthcare systems, relationships, work, and daily well-being.

Through her writing and coaching path, Tanita encourages others to move beyond survival mode and reclaim purpose, confidence, and agency without pretending chronic illness is inspirational or “a lesson,” but also without letting it erase joy.

When she’s not writing or studying, Tanita enjoys journaling, reading personal-growth books, mindfulness practices and breathwork, yoga, creative content-building, and making space for rest and laughter with the people she loves.

Danita LaShelle Jones is a professional writer, storyteller, and writing strategist with expertise in logistics and creative communication. She specializes in helping high-impact individuals strategically leverage writing as the premier communication tool of our time. When she’s not privately coaching other writers or producing plays, she and her husband are raising four incredible children, including one who lives with hereditary angioedema. As a caregiver, Danita hopes that her column will show other caregivers and patients that they’re not alone. Championing the idea to “inform the world,” she seeks to reveal HAE in such a way that even if it’s rare for an individual to have it, it isn’t rare for everyone to know about it.

Ethan joined BioNews in 2022 after two decades in the health information and publishing world, where he launched, grew, and eventually sold Vertical Health to Remedy Health Media. After several years in business development at Remedy, he came to BioNews to focus on elevating content and community support for health conditions that deserve greater visibility. His connection to rare disease is also personal, with a close family member living with a rare condition.
A graduate of Cornell University, Ethan lives in Ithaca, NY, with his wife, Rachel, a mental health therapist, and their three boys — Rylan, Liam, and Eli. Beyond his work in healthcare, he founded the Youth Entrepreneurship Market (www.YEMithaca.com), helping young people build entrepreneurial skills and bring their ideas to life. He was recently honored as Ithaca’s Hometown Hero for his work with local youth and his service on multiple mission-driven boards and committees.

Dr. Natalie Katz is an Assistant Professor in the Department of Pediatrics, Division of Neurology at Duke University. She is co-director for the Duke Children’s Neuromuscular Program which offers multidisciplinary care to children with neuromuscular diseases. She is actively involved in clinical research and clinical trials with the goal of bringing novel treatments to children with neuromuscular disease. Dr. Katz received her MD/PhD at the University of Kansas and completed residency training in Child Neurology at Children’s Mercy Hospital in Kansas City, MO, which was followed by concurrent fellowships in Neuromuscular Medicine and Experimental Therapeutics at the University of Rochester.