When Cory Burell’s dad felt the symptoms of ALS 25 years ago, doctors had no idea what was wrong. His dad underwent test after test before ultimately being told he had ALS. Cory’s dad passed away just one month after his diagnosis.
In February of this year, at 34 years of age, Cory began feeling his left foot drop. Instead of uncertainty that his father was met with, Cory’s diagnosis was quick. Cory and his side of the family have seen the horrifying effects of ALS before but his wife Alison and their two young boys, Garrett and Hunter, have never had to face this disease and are learning as each day passes. Cory got genetic testing and knows now that he carries an ALS associated gene. Soon after he was diagnosed, he enrolled in a clinical trial on a compound called NP001 as well as the Precision Medicine Program at the ALS Therapy Development Institute (ALS TDI).
While Cory considers his ALS progression relatively slow, with his breathing still over 100%, the reality is that there are still no broadly effective treatments or cure for ALS. “Every day a piece of my functionality dies,” he says, “Every day I know it's one less day I'll see my children. Every day I know it's one less day I'll be able to tell my wife I love her unless things change.”
Following hundreds of questions from people who know little or nothing about ALS, including a physician, Cory is making it his mission to raise much needed awareness for a disease that isn’t as rare as many people think and can affect anyone.
Along with raising awareness, the Burells recognize that in order to see an end to ALS, vital funding must be put towards research for effective treatments and cures. The Burells have come together and decided to focus their efforts on fundraising for ALS TDI. On Sunday, November 5, 2017 the family and their friend are holding a fundraiser that consists of some beer, some NFL football and some family friendly Skee Ball at Lincoln Brewing & Distilling. Cory came up with this as a fundraising idea having been in a local Skee Ball league for many years and wants to use this event as a reunion for all of the players. The event will feature both a singles and team of two bracket and will be the first time a Skee Ball event is held to raise funds for ALS TDI.
The Burell’s have hopes of raising $10,000 through this event with registrations, donations, a silent auction and ALS TDI merchandise for sale at the event. If you can make it, there are still some places left in the singles bracket with tickets at $25 per person. Doors open at noon and the first tournament kicks off at 2.00PM. For more information, please visit the event page. If you can’t make it, please consider donating in Cory’s honor using the donate button below!
