The Spinal Muscular Atrophy Podcast
Join Bionews Associate Director of Community Content Kevin Schaefer as he explores current SMA issues through engaging conversations with those living with the disease, medical professionals, and caregivers. Listen to the latest episodes below, and follow SMA News Today on SoundCloud to catch up on all discussions in this exciting series.
#147: Brandi Lewis, rare disease advocate and speaker
In episode 147, host Kevin Schaefer talks with Brandi Lewis from Birmingham, Alabama. A blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder, Brandi is passionate about helping others diagnosed with chronic illnesses. She herself has been diagnosed with aplastic anemia and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread awareness and support blood disorder patients. She notes that her greatest accomplishment is having saved three lives by encouraging people to register to become bone marrow donors. Brandi is a dog lover of a labradoodle, Milo, and thinks laughter is the best medicine.
About Kevin Schaefer
Kevin graduated from North Carolina State University with a bachelor’s in English in 2016, and he is passionate about different forms of storytelling. He started at Bionews in 2017 as a columnist for SMA News Today, sharing his experiences as an adult with SMA type 2. He eventually transitioned to a full-time role, helping build the company’s multimedia and forums divisions.
As director of forums, he is responsible for supporting the director of multichannel content in bridging the gap between our patient populations and our websites. He does this through building and maintaining patient and caregiver forums across Bionews’ disease sites. He oversees every step of the process, including hiring, training, and guiding forum moderators. His goal is to create engaging and supportive online communities for patients and caregivers to connect.
