Hey y'all! Hope you guys had the best Easter and weekend spent with loved ones! Today, on the blog, we're talking HOPE! Insert Mia Nasif... the very definition of inspiring. Mia is six years old and has a rare neurogenetic disorder affecting her ability to stand, walk, speak, learn and regulate emotions. She is 1 of 14 in the WORLD with this rare disease. It is so rare and so new that it doesn't even have a name yet.
What does that mean? It means that you start from ground zero... Mia's parents, doctors and research scientists have spent the past six years searching for answers, trying to diagnose the underlying genetic cause of Mia's condition. There are so many unknowns BUT progress is being made... giving her parents HOPE and a mission. (Read more here.)
Progress? Mia's team of research scientists are busy working to get the first paper written and published on Mia's condition. THIS IS HUGE! Once it's published, it goes out to all of the neurologist in the world! That is one giant step towards finding other families with similar symptoms and disorders, more doctors and scientists, more brainpower "in the room", and hope that a diagnosis will follow... opening doors to treatment options.
What does that mean? It means that you start from ground zero... Mia's parents, doctors and research scientists have spent the past six years searching for answers, trying to diagnose the underlying genetic cause of Mia's condition. There are so many unknowns BUT progress is being made... giving her parents HOPE and a mission. (Read more here.)
Progress? Mia's team of research scientists are busy working to get the first paper written and published on Mia's condition. THIS IS HUGE! Once it's published, it goes out to all of the neurologist in the world! That is one giant step towards finding other families with similar symptoms and disorders, more doctors and scientists, more brainpower "in the room", and hope that a diagnosis will follow... opening doors to treatment options.
What can WE do? Mia's friends, family, church and community have all joined hands in putting together the MIATHON... a rowing marathon that will take place this Saturday, April 27th. It will begin at 8:00am at Coyoto Crossfit in Madison, MS. Athletes will row an entire marathon... over 40,000 meters that will take around 4 hours to complete! This is by design... when it's "too tough" "too long" "too impossible", we row on for Mia because she rows all day, every day of her life!
You can sign up individually or as a team of two. Can't row? No problem; there are options to donate or become a sponsor. As of today, there are around 30 rowers. Y'all, this is incredible! Let's grow that number, share this story, pray for Mia and her family, and join their mission!
Tickets and more information can be found here: www.miathon.com
You can sign up individually or as a team of two. Can't row? No problem; there are options to donate or become a sponsor. As of today, there are around 30 rowers. Y'all, this is incredible! Let's grow that number, share this story, pray for Mia and her family, and join their mission!
Tickets and more information can be found here: www.miathon.com
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