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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.

This topic has 1 reply, 2 voices, and was last updated 2 years, 1 month ago by Kevin Schaefer.

  • Author
    • #13679
      Brianna Albers

      You may have heard of autonomous vehicles. In short, these cars can drive themselves, making transportation fully autonomous for participating riders. While the concept is sound, bringing these vehicles to life in a safe way is proving to be a challenge. Still, more and more consumers are getting on board, citing the importance of transportation in modern society.

      Autonomous vehicles are particularly of interest to individuals with disabilities who may not have access to reliable transportation for various reasons, including financial resources and physical ability. Self-driving cars, however, could level the playing field, allowing people with disabilities to get around without having to rely on caretakers.

      To have this kind of impact on the disability community, autonomous vehicles need to be designed with disabled individuals in mind; they need to be accessible. The We Will Ride Campaign was founded to address this issue, facilitating a conversation about the needs of disabled individuals and how those needs can be met by manufacturers and other key institutions. The coalition was founded by disability rights leaders and currently includes American Association of People with Disabilities, National Council on Independent Living, Disability Rights Education and Defense Fund, United Spinal Association, and Paralyzed Veterans of America, among others.

      The cornerstone of the Campaign is its open letter, which has been sent to the CEOs of vehicle manufacturers such as Ford, Honda, and Toyota. The open letter addresses the importance of autonomous vehicles for people with disabilities and demands the design of accessible alternatives. In the end, the letter states, “accessibility starts with design and intention. … The choice is yours.” You can sign the letter by submitting your full name, your email address, and your zip code. The Campaign also features the stories of disabled individuals who would benefit from accessible autonomous vehicles.

      To sign the Campaign’s letter, click here. You can keep up with the movement via social media using the hashtag #WeWillRide.

    • #13709
      Kevin Schaefer

      This is great! It’ll be cool to see more advancements like this in the coming years. I’m glad too that people are seeing transportation as a legitimate need for people with disabilities. Thanks for sharing.

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