Poker Tournament | July 22, 2023 | Oak Ridge Family Social Club
9:00am Poker Tournament Check-in (light breakfast)
10:00am Poker Tournament Begins
10am-6pm Beer included in all sponsorship and individual/spectator tickets. Wine, cocktails available for purchase.
12:00pm Lunch Buffet
6:00-10:00pm After Party Dinner Buffet & Open Bar
6:30pm Final Table Begins Play
Who you are Helping
Ella-Mae Anstaett (8) was recently diagnosed with a rare and fatal neurodegenerative disease called CLN3 Batten Disease that takes away childhood, and then takes away the child.
Ella-Mae is a sweet, talented, and artistic 8 year old who is loved and supported by her parents, Ryan and Alison and her 4 year old brother, Logan.
Ella-Mae is finishing up second grade at St Therese in Parkville, MO. Her favorite things are gymnastics, riding her bike and playing with friends. The family is trying to raise $240,000 a year for the cost of a life-saving medicine (Miglustat). She will need to be on this for life. This medicine is not FDA approved for her condition but is approved for other lysosomal storage diseases similar to Battens. Therefore, insurance is denying to accept or pay for it. This medicine is showing phenomenal results of slowing down the progression and even stopping it. On top of the medicine, there will be a lot of travel expenses, medical trials to get into and countless doctor’s appointments to attend in the years ahead. Right now she is legally blind but her near future includes complete blindness by age 10, seizures, cognitive decline, dementia, Parkinson- like symptoms, loss of motor function and death. Without this medicine she doesn’t have a chance. How beautiful would it be if we could stop the progression right now when she still has some vision remaining?!
Help us rally around the Anstaett family and let’s give Ella-Mae a fighting chance!
HOSTED AT
SPONSORED BY
Michelle and Frank Termini, Andrew Ross Termini Foundation and Nina’s Wings
