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Episode 34 Natalia Strong and Learning about SMA and what we all can do to help with Marisa Boidi
I got to sit down with Marisa Boidi and her 2.5 year old daughter Natalia who was diagnosed with SMA at 5 weeks old. SMA is Spinal muscular atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and sometimes fatal muscle weakness.
SMA affects approximately 1 in 11,000 births, and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.
There are four primary types of SMA—1, 2, 3, and 4—based on the age that symptoms begin, and highest physical milestone achieved.
Individuals with SMA have difficulty performing the basic functions of life, like breathing and swallowing. However, SMA does not affect a person’s ability to think, learn, and build relationships with others.
The Boidi Family and Friends have raised $120,000 in 2 years to help not just Natalia but all children diagnosed with SMA. Be sure to follow Natalia on Facebook here https://www.facebook.com/Nataliasfight/?epa=SEARCH_BOX.
Be Au Sm will donate $5.00 for every rating and review submitted on ITunes Podcast up to 100 ratings and reviews between 8/13/19-11/2/19.
Natalia and Boidi family you are Au Sm thank you for sharing your life with us.
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