Fight for Abigail Dinner and Silent Auction to support Cure Sanfilippo Foundation
CINCINNATI - Abigail Means is a six-year old from Taylor Mill, Kentucky who is battling a rare terminal disease called Sanfilippo Syndrome. With this disease over time a toxic material called heparin sulfate will build up in her brain and body leading to severe disability and death before she reaches her teens. The average lifespan for children with this disease is 14 years.
Fight for Abigail, a foundation created in Abigail Means’ honor, partners with the national Cure Sanfilippo Syndrome Foundation a 501C3 (Tax ID: 46-4322131) to help promote awareness for the disease and raise funds to help with trials for a cure.
This year, Fight for Abigail will be hosting a fundraiser with dinner, dancing, and a silent auction, emceed by Big Dave (Dave Chandler) from B105, at the Twin Oaks Golf & Plantation Club on October 27, 2017 from 6:00 PM- 10:00 PM. Attendees will also have the opportunity to hear the stories of other families with children effected by this terminal disease.
Fight for Abigail is looking to our community businesses and residents to help with donations for the auction, sponsorship of the event, and even single ticket sales. They have a fundraising goal set for the event to exceed $25,000. All proceeds from the event will be donated to the Cure Sanfilippo Syndrome Foundation.
WHAT: Fight for Abigail Dinner, Dancing and Silent Auction
WHEN: Friday, October 27, 2017 6:00PM- 10:00 PM
Twin Oaks Golf & Plantation Club in Covington, KY
COST: Various sponsorship levels still available, single tickets $65
About Fight for Abigail & Cure Sanfilippo Foundation
Fight for Abigail was founded by Jennifer and Michael Means, the parents of Abigail Means. Together with the national origination, Cure Sanfilippo Foundation, their goal is to help generate awareness about the disease and raise funds to support trials in Columbus for Abigail and other children suffering from this disease. For more information visit: http://www.fightforabigail.com/ & https://curesff.org/
About Sanfilippo Syndrome
Sanfilippo Syndrome is a fatal progressive disease that primarily affects the brain of children born with this disease. A genetic defect passed on from each parent results in missing or poorly functioning enzymes needed for cells to work normally. Without these enzymes, cells are unable to break down and recycle cellular waste. Over time, this waste builds up causing cells act abnormally and then die.
Children with Sanfilippo Syndrome typically do not show signs of this devastating disease until 2-6 years of age. The disease is working on them from the time of conception. However, it takes time for the body and brain to accumulate enough waste material to begin to cause symptoms like hyperactivity, speech delay, autism, recurrent ear/sinus infections. Children then begin to lose the skills they used to have- talking, walking, eating. Most children develop seizures and painful movement disorders before they pass away. Typical life expectancy for the most rapidly progressive form of Sanfilippo Syndrome (Type A) is in the mid-teens.
Sanfilippo Syndrome is named after the pediatrician, Dr. Sylvester Sanfilippo, who first described the disease while studying at the University of Minnesota (USA) in 1963. Since that time, it has been found that there are 4 different subtypes of Sanfilippo (A, B, C, D).