Patient Advisory Board
At Bionews, we believe the patient’s voice must be at the heart of every decision we make.
Our Patient Advisory Board embodies this commitment: We look to them for insights uniquely rooted in the lived experiences of having rare diseases. Their guidance ensures that every initiative and partnership is developed with a clear focus on what truly matters to patients. By elevating their perspectives, we develop communities and content that no one else can, aligning all our efforts with the genuine needs and aspirations of the rare disease community.
Desiree Lama
Desiree Lama is a 20-something-year-old PhD student living in Austin, Texas. She was diagnosed with relapsing-remitting multiple sclerosis in 2016 at only 17 years old. Since her diagnosis, Desiree has wholeheartedly dedicated her personal life, academic studies, and professional endeavors to advocating for individuals living with disabilities and chronic health conditions.
Her journey is not just one of overcoming adversity; it is a testament of her unwavering dedication to improving the lives of others.
Kerry Wong
Kerry Wong lives in Westchester, New York, with her husband of nearly 25 years. She has been diagnosed with sarcoidosis, arthritis, small fiber neuropathy, and an endless list of comorbidities. Though disabled, she remains active as a writer and patient advocate. A self-proclaimed “buttahfly,” Kerry recounts her disease-inspired transformations in her Sarcoidosis News column, “Float Like a Buttahfly.”
Her goal is to help others in disabled and chronic illness communities feel seen, validated, and empowered. To that end, Kerry published “Kaleidoscope: Rare Disease Stories,” a diverse collection of rare disease warriors’ firsthand accounts.
Brandi Lewis
Alabama-based Brandi Lewis is a blood disorder awareness educator who shares her story and educates others on different types of blood disorders.
A graduate from the University of North Alabama and a former Miss UNA, Brandi began her journey of sharing the importance of dreams and goals in 2011. She also is a recent TEDx speaker sharing the importance of relationships with chronically ill patients. Inspired by her 10-year battle with two blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria, she dedicates her passion to changing the narrative for blood disorder patients.
Young Lee
Young Lee lives in Cary, North Carolina, and graduated from NC State University in 2013 with degrees in economics and international studies.
After working for a few years in finance, Lee shifted his attention to writing and library work. Although Lee first learned he had Charcot-Marie-Tooth (CMT) type 1A at a very young age, he didn’t participate much in the CMT community until 2018 when his friend and fellow writer Kevin Schaefer encouraged him to explore it more. Now he tries to help his community to connect more deeply through this board and by writing a column for Charcot-Marie-Tooth News.
DeAnn Runge
As a content creator for Bionews, DeAnn Runge makes vlogs and moderates the forums for SMA News Today. By sharing her day-to-day activities, she hopes to convey that others with SMA can have a fulfilled life despite obstacles. It’s a bonus to her if someone picks up a tip or two along the way. We can all learn from each other, right?
Growing up in a rural Minnesota community she didn’t see much disability representation. She hopes to change that through her creative and advisory work.
Brad Dell
Brad Dell is deaf and was diagnosed with cystic fibrosis at 2 months old in 1993. He received a bilateral lung transplant from UC San Francisco in January 2017, then cochlear implants nine months later. He lives in Hawaii, where he was raised.
When not traveling and pastoring a church, he’s advocating for the well-being of disabled folk both through his role as director of community content at Bionews and through involvement in speaking engagements and advisory boards.
Kevin Schaefer
Kevin Schaefer, who lives in Cary, North Carolina, is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability through his SMA News Today column and as host of the SMA News Today Podcast. As fun as the stories are, telling them also extends from his passion for raising disabilities awareness.
In addition to his advocacy work, he is the associate director of community content for this site’s parent company, Bionews.
Join our team
Working at Bionews isn’t just a job — it’s a chance to apply your skills to literally changing people’s lives. If that’s the kind of rare opportunity you’re looking for, we’d love to hear from you.