Auggiepalooza | Home Of The Auggiepalooza Project
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August Gianpiero King Chinchilla is a mini master of his own universe with a smile as big as his heart.

The AuggiePalooza Project is a way for family, friends and community members to assist August in the completion of the items on his Baby Bucket List.  People who in any small way would like to sponsor his various adventures, ensuring he has as much fun as he possibly can, to have a good time til there’s no time left.

Auggie’s Story…

Auggie or Augs, as he is known to his close family and friends, was born on a super sunny May 14th in 2007 at NYU Medical Center in full view of the Statue of Liberty.  Both August and his father, Michael Angelo Chinchilla, would eventually test positive for Huntington Disease, a devastatingly incurable, hereditary brain disorder for which there is no current ‘effective’ treatment. 

The aggressive neurodegenerative disorder causes the affected individuals’ abilities to walk, think, reason and talk to gradually erode until they leave this life. Imagine if ALS, Parkinson’s and Alzheimer’s were all mixed together and multiplied by a thousand and you will begin to see the slow devastation that is Huntington’s Disease.

August, at 8 years young, lives with Early Onset Juvenile Huntington’s Disease, one of the rarest forms of the disease.  Currently the only JHD elementary kid enrolled in school in the US, he attends a public Waldorf school in Los Angeles, CA, likes to sing, enjoys playdates, building Legos, sharing stories and loving the world around him. Oh, and he has a thing for Star Wars!

Huntington’s disease is incurable. There is no current treatment that can reverse its progression or slow it down. August participates in the only national observational study for Juvenile Huntington’s Disease and will be one of the very first children to test out a new drug to possibly treat Huntington’s. 

Learn More About Juvenile Huntington's Disease

The Huntington’s Society of America says 1 in every 10,000 Americans has the disease – 30,000 people.  Prevalence of the disease varies according to ethnic ancestry – people with Asian or African inheritance, such as August, have a 1 in 1,000,000 risk of becoming affected. 

Juvenile Huntington’s disease (juvenile HD) is a form of Huntington’s disease with an onset before age 20, which occurs in 10 percent of HD cases. Juvenile HD is caused by the same gene as the adult form of the disease, but its symptoms are different. Common symptoms include rigidity, seizures, and dementia.

 

Early-onset HD is a form of the disease with symptoms that present between infancy and 6 years of age and occurs in 1-3% of Huntington’s Disease cases, about 10-30 kids.

There are currently NO clinical research studies and only ONE Juvenile HD Observational Study in the US in which August is participating.  The Kids-HD study is a brain imaging study run by researchers in the Department of Psychiatry at the University of Iowa Hospitals and Clinics.  Their research is about kids who have a parent or a grandparent who has Huntington Disease. 

LINKS

University of Iowa Kids-HD Study

http://kids-hd.psychiatry.uiowa.edu

The Basics of JHD Huntington’s Disease Youth Organization

http://en.hdyo.org/pro/articles/52

What is Juvenile Huntington’s Disease

http://hda.org.uk/jhd/what-is-jhd

Stanford’s Huntington’s Disease Outreach Project

Any contribution amount is greatly appreciated, thank you !

Auggie’s Bucket List

His list is alway changing and evolving. When one of his wishes is fulfilled we will add pictures and comments about his experience.

Connect With August

One of August’s favorite things to do is take pictures and videos of all the things, people and places he loves and share it with the world.

The Auggiepalooza Project Team would LOVE to hear from you!!!

If you would like to contact the Auggiepalooza Project with information about helping with his Baby Bucket List,

 

please contact MamaBear@Auggiepalooza.com