The Marquette University Student-Athlete Advisory Council will be holding its annual fundraiser at the men's basketball game against the University of Connecticut at 8 p.m. on Tuesday, Jan. 25 with proceeds benefiting the Children's Medical Research Foundation.
In 1995 at the age of four, now 19-year-old Kirby Wilson was diagnosed with Sanfilippo "B" Syndrome, a rare and devastating neuro-genetic disorder caused by an enzyme deficiency which allows sugar to slowly build in the brain, stopping normal development, causing hyperactivity, sleep disorders, loss of speech, dementia and typically death before adulthood. At this time, there is no cure for the disease and while it is estimated that Sanfilippo occurs once in every 24,000 births, each year thousands of children are diagnosed with one of more than 5,000 rare genetic disorders
In response to her diagnosis, Kirby's parents established the Children's Medical Research Foundation, Inc. in 1995 to fund medical research and find a cure for Sanfilippo Syndrome and other neuro-genetic disorders. The not-for-profit foundation has granted over $3 million and funded research at seven universities, with more than 95 percent of all proceeds serving to fund research.
Next Tuesday, immediately following the Connecticut game, fans will not only have the opportunity to support Marquette University student-athletes in their quest for a cure, but also give hope to thousands of children and families searching for treatment for the many rare but crushing genetic disorders. Find a Marquette student-athlete in a "Cure for Kirby" t-shirt at one of the Bradley Center exits after the game to contribute to finding the cure.
For more information on the Children's Medical Research Foundation, please visit www.curekirby.org or for more information on Sanfilippo Syndrome and other Mucopolysaccharide (MPS) disorders please contact The National MPS Society at www.mpssociety.org.