I reached out to Beat Nb in April of this year. It’s an organization that I had been following here and there for some time while my son Nnamdi was alive. Nnamdi passed away on October 31st of last year after battling the disease for 18 months. He was two. By April of 2018, I was physically and emotionally exhausted from being sad all the time and wanted to do something that I felt will bring purpose in some way to Nnamdi's passing. That’s how Karaoke 5k was born.
My heart resonates with Beat Nb as an organization because it is founded and run by parents whose children have fought or are currently fighting this disease. Kyle Mathews was my contact and cheerleader through out this process. From the start of planning and up until the day of the event, he remained encouraging and supportive. The primary goal of BeatNB is preventing relapse and increasing survival using a drug called DFMO which has been shown to increase survival rates in children with high risk NB. Prior to DFMO, children who had relapsed had little to no options; now we are seeing the tide turn with this new medication. I wish my Nnamdi baby had this opportunity, and it’s for this reason that we did Karaoke 5K! To raise awareness, and funds for continued research so that no one has to lose their Nnamdi.
I am so humbled by the support I have received through this experience. I want to thank everyone sincerely. I am so grateful to our amazing sponsors, who did not hesitate to give financially to our cause, our volunteers who gave of their time and talent and the individuals who took time to register to run. Also thankful for my family and friends who have navigated this journey with me and have supported me along the way. I am thankful for my children who literally save me everyday, and to my husband, my person, I can’t imagine this journey without you. This is for you Nnamdi baby. We love you.
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