Laps for Lucas Virtual Walk/Run for Sanfilippo Awareness
Organized by: Stacey Montgomery
Each year we give the proceeds of our fundraisers to organizations working on supporting research for treatments for Sanfilippo Syndrome.
Along with Laps for Lucas , we will also host Links for Lucas (Sept.13th) and the Gridiron Football (August 8th) camp in the summer. This year we are excited to announce that several clinical trials are in the works in hopes that a treatment for many children suffering from Sanfilippo Syndrome will be close at hand. We will continue our efforts at raising awareness and continue to help fund research in honor of the courageous strength that we watch Lucas portray daily.
Make sure and wish Lucas a Happy Birthday on July 31st. A definate milestone of celebrating 18 years of courage.
Here is how you can help! To participate in the Laps for Lucas Virtual Walk/Run you can give a donation of any amount. Walk or run either 1 mile or a 5K. Post your photos online on Lucas' Facebook Page / Hope for Lucas. You can follow the link here :
https://www.facebook.com/pages/Hope-for-Lucas/186242644734320?fref=ts. Submit your times with your post or photos!
What is Sanfilippo Syndrome:
Sanfilippo Syndrome is a rare and catastrophic genetic disorder that takes its name from Dr. Sylvester Sanfilippo, one of the doctors who first described the condition in 1963. Sanfilippo Syndrome is a mucopolysaccharide disorder and is also known respectively as MPS III. It falls within a broader group of genetic disorders known as Lysosomal Storage Diseases. The consequences vary greatly among the subgroups, ranging from a mild impact with a normal life expectancy to a severe and terminal outcome
Children afflicted with Sanfilippo Syndrome are missing an essential enzyme that breaks down strings of a complex body sugar called heparan sulfate. The partially broken-down sugar, or mucopolysaccharide, accumulates in the brain and the body’s cells and tissue causing progressive damage. The storage process affects children’s appearances, bodily functions and development. Sanfilippo children tend to look alike and have similar health problems.
A Sanfilippo child appears normal at birth and develops within the range of normal for the first year or two, but as more and more cells become damaged symptoms begin to appear. Eventually, the build-up of muccopolysaccharides will cause hyperactivity, sleep disorders, loss of speech, mental retardation, seizures, loss of mobility, dementia, vegetative state and finally death. Life expectancy for a child with Sanfilippo Syndrome is between 12 to 20 years.