The Spinal Muscular Atrophy Podcast with Kevin Schaefer · SMA News Today

#139: Dianna Warren, Ms. Wheelchair USA Ambassador

·38 min·2 clips

Diana Warren says her platform speech was on “positive attitude” and “abilities what you're capable of doing.”

1. The SMA News Today podcast episode centers on Diana Warren, a Canton, Ohio resident with SMA Type 3. 2. Host Kevin Schaefer introduces himself as a columnist and forums director for smanewstoday.com and says Warren has been married for 44 years. 3. The conversation asks what Warren’s life has looked like from childhood diagnosis through adult advocacy and daily routines. 4. Warren says doctors diagnosed her at age 6 after delayed walking, “scooting,” muscle biopsies, and testing in Cleveland, Ohio. 5. She recalls being told she had “a form of muscular dystrophy,” later called “neotonic atrophy,” before SMA progression became clearer. 6. She says she walked until about age 9, then wore full-length leg braces and used a wheelchair until about age 12. 7. Warren explains that scoliosis made the braces unusable, and she eventually depended on the wheelchair full time. 8. She says her arm strength later declined, leading her neurologist to start Evrysdi, the medicine she identifies as slowing SMA progression. 9. Warren describes growing up before the ADA with separate schooling for disabled children, therapy breaks, and limited access to ordinary classrooms. 10. She says a new high school changed her experience because classmates talked to her, helped her, and invited her to football games and proms. 11. She remembers being pushed to the back of places as a child and says that discomfort kept her from trying college. 12. Warren says family vacations, roller skating trips, and her brother’s football games still kept her involved in ordinary activities. 13. She recalls joining a cheerleading squad for her brother’s team, wearing the full outfit, and being honored by the mayor of Keaton at season’s end. 14. Warren says she married at 20 in 1979 after three years of dating a man introduced by a school friend who had a disability. 15. She says her husband treated her “as the person that I am,” and that they have camped, traveled, attended car races, and gone to concerts together. 16. Warren explains that her husband has usually been her main caregiver, with help from her mother and a sister when needed. 17. She says she ran a disability bowling league for 32 years, using a ramp and a ball without holes, and once had 32 bowlers across the league. 18. Warren recalls a tournament where nearby bowlers complained about her team, then changed their minds after seeing the group bowl well. 19. Her tone is direct and detailed, and Kevin Schaefer uses follow-up questions that keep the conversation moving through life stages and milestones. 20. Listeners interested in SMA history, disability sports, and long-term advocacy will find it useful, while people wanting a short medical update may skip it.

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