#152: Kamil Goungor, Disability activist
In episode 152, host Kevin Schaefer talks with Kamil Goungor from Athens, Greece. Kamil, who has SMA type II, works for the European Network on Independent Living and is the co-founder and chair of the Greek independent living organization, i-living. In this episode, Kamil shares his experiences growing up with SMA, pursuing education and career opportunities, and advocating for the disabled community. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
28 Elo 45min
#151: Anton Paras, marketing executive in digital health
In episode 151, host Kevin Schaefer talks with his colleague, Anton Paras. Anton is a marketing executive for Bionews Inc., the publisher of SMA News Today, and he lives in the Bay Area, California. Recently, Anton went with Kevin to Anaheim, California, for part of the annual Cure SMA conference. There, they worked on a video about theme park accessibility and interviewed multiple people in the SMA community. During this conversation, Anton reflects on this experience, shares his perspective on engaging with rare disease communities, and offers insight into what others in the digital health space can do to better support patients and caregivers. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
30 Heinä 36min
#150: Jenna and Tanya Vega share their love story
In episode 150, host Kevin Schaefer talks with Jenna and Tanya Vega from Palm Springs, California. Jenna and Tanya discuss their seven years together, navigating daily life with SMA, and their wedding last year. They also share tips and advice for other couples in the SMA community.
1 Heinä 28min
#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA
In episode 149, host Kevin Schaefer talks with Dr. Jessica Keogh from Philadelphia, Pennsylvania. An educator, disability advocate, and certified life coach, she discusses growing up with SMA, living independently, navigating relationships, and becoming an advocate. Jessica’s website: https://www.faithabovemyability.org/ ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
21 Touko 41min
#148: Ashley Fox and Madeline Engel discuss friendship and caregiving
In episode 148, host Kevin Schaefer talks with Ashley Fox and Madeline Engel from California. Ashley has SMA, and Madeline became her best friend and caregiver when they were in college. They discuss the nuances of friendship and caregiving, plus touch on confronting internalized ableism and navigating graduate school and careers. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
16 Huhti 44min
#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. Follow Brandi on Instagram at @_brandilewis_! Brandi’s website: www.brandilewis.com Brandi’s column: https://pnhnews.com/category/columns/from-fear-to-fighter-a-column-by-brandi-lewis/ ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
27 Helmi 37min
#146: TJ Wall, graduate student with SMA
In episode 146, host Kevin Schaefer talks with TJ Wall from Texarkana, Texas. TJ is working on his master’s in education at Texas A&M University, and he hopes to become a high school football coach. He talks about growing up with SMA, his love of sports, and his future aspirations. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
14 Tammi 31min
