CHASE the CURE

Event Date

Sat, Jul 14, 2018

Address

Roy, UT

About This Activity

Thank you for signing up to run for Chase The Cure! 
In 2015 little Chase began down the path of seeing doctors after a recommendation from Chase’s 1st grade teacher.  After many tests and visits with different specialists it wasn't until 2017 and a DNA test that the diagnosis for Chase was found.  Chase, who at the age of three, he renamed himself to Jasper the Champion Rider Shooter and at age four allowed everyone to shorten it to Jasper the Champion was diagnosed with the very rare disease Classic Juvenile NCL, Batten’s Disease. He is now nine and is known as Jasper,  Loss of vision being the first symptom, seizures, and progressing to physical and mental incapacitation requiring 24-hour care until premature death in teens to early 20’s. Our family was caught off guard and absolutely devastated. The Dr. informed us that at this time there is no treatment and no cure available.
Chase loves telling stories, the holidays, playing cowboy, teaching others and the animal cows among many, other activities. With his vision impairment he amazes me everyday. He is considered legally blind and not once has he ever complained or felt bad for himself knowing with his vision he is not the able to see as well as his brother, family and friends.   Being a rare disease, there is limited government funding and big drug companies refuse because they feel they will not recoup the costs of finding a treatment or cure due to the small numbers of affected children. Because of this the work organizations are able to do with patient advocacy groups and families working together is so important to addressing the disease for Chase, the other children and their families. Your financial support can help get to a clinical trial in 2018. This treatment can also help others affected by other lysosomal storage disorders, and possibilities for other neurodegenerative diseases like Alzheimer’s and Parkinson’s.
Thank you for your help and support for this incredible cause!

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