BENEFITING: THE CHILDRENS MEDICAL RESEARCH FOUNDATION INC
KELLY BRUMMET wrote -
I have been involved with The Children's Medical Research Foundation for many years. The foundation was formed in 1995 by the Wilson family. Their youngest daughter, Kirby, was diagnosed in 1995 with this rare and catastrophic disorder. Kirby is now 23 years old, but is unable to do anything on her own. My family has been involved with the Wilsons since before Kirby was diagnosed, and my parents have been on the board since the foundation was formed. I am a part of the Junior Board.
CMRF raises money and awareness with regards to a disorder by the name of Sanfilippo “B” Syndrome and other neuro-genetic disorders. “Children with Sanfilippo are missing an essential enzyme that breaks down a complex body sugar called heparin sulfate. This sugar slowly builds in the brain, stopping normal development and causing hyperactivity, sleep disorders, loss of speech, dementia and typically death before adulthood. Sanfilippo Syndrome is one of seven Mucopolysaccharide (MPS) disorders. There are four different enzyme deficiencies that cause Sanfilippo. The Sanfilippo disorders are described as type A, B, C, or D. There is very little difference between the four types, though there have been a few very mild cases of the B form reported where the children have remained relatively healthy into early adult life.”
I need your help! While we have made tremendous steps in finding a cure, funds for fighting this disease are short, this disease is rare and the need for a cure is critical. With adequate funding a clinical trial for Types A and B could begin as early as December 2014. Please help support a cause dear to my heart and donate to fund a cure! The website for the foundation is http://www.curekirby.org/.