August is SMA Awareness Month
Spinal Muscular Atrophy:
Featuring the Fighting for Kaiden Foundation & the Eakin family
August is Spinal Muscular Atrophy (SMA) Awareness month. To shine a spotlight on this rare disorder, we are resharing our August 2023 Spark A Movement podcast episode where we discuss SMA, share some resources for families, and share an inspiring SMA story.
What is Spinal Muscular Atrophy?
According to Cure SMA, "Spinal muscular atrophy (SMA) is a progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling, and walking."
The Story of the Eakin Family
The Eakin twins, Bryce and James, were diagnosed with SMA in infancy after their parents noticed that they were missing developmental milestones. The parents of the boys, Kelly and Jeff, along with their family fiercely supported and advocated for Bryce and James. Through their efforts to find the best treatment possible for Bryce and James, they discovered a clinical trial (for Spinraza, which in 2016 became the first clinically approved drug for treating SMA) which the boys participated in and received the treatment. The early effects of the clinical trial for Bryce and James included the development of news skills, including the ability to roll over. Since their initial participation in the clinical trial, the boys have continued to develop new skills and independence over the years due to their hard work, determination and endless dedication to achieve their personal potential. Throughout their SMA journey, their have been many support systems, healthcare professionals, and organization that have provided assistance in one form or another, including
The Fighting for Kaiden Foundation, which helped the Eakin family with the funding needed for essential SMA related equipment. The mission ofThe Fighting For Kaiden Foundation drew Kelly to give back to the non-profit, where she currently serves as the President.
The Fighting for Kaiden Foundation
According to
The Fighting For Kaiden
website, their mission is "committed to enhancing the lives of those struggling with Spinal Muscular Atrophy (SMA) on multiple fronts. Directly, we strive to raise awareness of the disease on the local, regional and national levels. Our foundation provides need-based financial support to affected families for equipment and travel. We understand the value of peer support and organize support groups and information for SMA affected families in our area. We provide directed donations for medical research in addition to medical equipment and services for SMA patients across the country. Our goals are driven by our devotion to improving the lives and finding a cure for those with SMA."
The Fighting For Kaiden Foundation steps in with funding when insurance doesn't. This wonderful non-profit has helped many families who have been impacted by an SMA diagnoses. They've helped through purchasing portable pulse oximeter machine, wheelchairs, suction machines, laptops and so much more. The Fighting For Kaiden Foundation is currently expanding its reach internationally, by providing information resources and exercises that can be done, such as physical therapy exercises at home.
Interested in hearing more about the Eakin Story?
If you are interested in learning more about the Eakin family and their story, listen to their story that the shared with the
Collective Church. Spotify links below:
Episode One: https://open.spotify.com/episode/2nHJnzt13QVgZdwvb0w2BH?si=b5c3c7f54919481d
Episode Two: https://open.spotify.com/episode/6uigbwVStaDXRbE7sbaVMN?si=77163d580a884211
Interested in another inspirational SMA story?
Listen in to
Spark A Movement Episode 7: Breaking Barriers with Austin Munro. In this episode our host chats with Austin Munro, a community member who lives a very full life and happens to have Spinal Muscular Atrophy. We discuss knocking down barriers about the way society views disability and inter-abled relationships as well as breaking down the barriers we tend to define ourselves by. If you are curious about seeing things through someone else's lens, hearing from a successful adult with a disability, or learning what you can do to raise awareness about accessibility rights in your town, then this episode is for you!
SMA Resources:
Muscular Dystrophy Association
Fighting For Kaiden Foundation
*Please note that information in this blog is not medical advice. If you have any questions, please contact your physician.
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