Please help us honor the memory of our dear Allison Rose Kirch who passed away last October with a donation of $18 for what would have been Allison’s 18th Birthday on July 29th. Thank you to all who have helped us over the years and donated to the National MPS Society!
We will be having a Kirch Golf for MPS in the Spring of 2014, stay tuned.
Allison is the daughter of Larry and Susan Kirch and sister of Helen Kirch. Allison was diagnosed with Sanfilippo Syndrome in 1998 at the age of 3. With your help, we have raised over $120,000 for Sanfilippo Syndrome research and MPS families. All funds raised have been donated to the National MPS Society.
Sanfilippo Syndrome (MPS III) is a muccopolysaccharide storage disease. It takes its name from Dr. Sylvester Sanfilippo, who described the condition in 1963. Sanfilippo Syndrome is a recessive genetic defect and occurs in 1 in 70,000 births. It is a degenerative disease characterized by mental retardation, joint problems, sleep disorders, hyperactivity, seizures, heart valve problems, trouble swallowing, and drastically shortened life span. Although there is some variability, the lifespan of children with MPS III averages between 14 and 16 years of age.
The reason we are hosting this event is so that future generations of children affected by MPS and related diseases will not have to suffer from these devastating diseases. Both public and privately funded research has expanded dramatically in the last few yeas and has lead to treatments in some but not all of the diseases supported by the National MPS Society.
Thank you for helping and participating in the fundraiser!
Larry, Susan and Helen Kirch
Contact: Larry Kirch, lkirch@centurytel.net
Checks can be mailed to:
National MPS Society, P.O. Box 14686 Durham, NC 27709
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