In episode 144, host Kevin Schaefer talks with Doug McCullough from central New Jersey. The author of “A Billion People in the Shadows,” a new book about understanding disability, Doug previously worked at Johnson & Johnson Pharmaceuticals and has a background in public speaking. He talks about growing up with SMA type 3, navigating employment with a disability, and advocating for an inclusive society.

Doug’s book: https://publishyourpurpose.com/books/a-billion-people-in-the-shadows-the-ultimate-1-hour-guide-to-understanding-disability/

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#144: Doug McCullough, Advocate and Author With SMA

In episode 145, host Kevin Schaefer talks with Carrie Manriquez from Sacramento, CA. Carrie is an elementary school principal, and her 24-year-old son Ryan has SMA type 2. She talks about her experiences as a parent and caregiver, connecting with the SMA community, and helping Ryan transition to adulthood.

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#145: Carrie Manriquez, Mother of adult son 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.

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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

#146: TJ Wall, graduate student with SMA

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/

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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.

#147: Brandi Lewis, rare disease advocate and speaker

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.

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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

#148: Ashley Fox and Madeline Engel discuss friendship and caregiving

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/

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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

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.

#150: Jenna and Tanya Vega share their love story

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.

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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums 


#151: Anton Paras, marketing executive in digital health

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.

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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums 

#152: Kamil Goungor, Disability activist

In episode 35 of the SMA News Today Podcast, host Kevin Schaefer interviews Mike Blakey from Gainesville, Florida. Mike is a part-time CPA and attorney, and he has SMA Type 3."

Photo Contributed by Mike Blakey

Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

#35 - Interview With Mike Blakey

Daily, digital coverage of the latest SMA news and perspectives.