Liv's Run for CURE: Help Us Raise Critical Funds to Support Epilepsy Research
On September 29, 2019, we're running a 5K in Chicago in honor of our daughter, Liv, to raise critical funds for Citizens United for Research in Epilepsy: CURE.
When Liv was just one week old, we found our precious baby girl unconscious and blue in Sandra's arms. The episode lasted only a minute and doctors assured us it was likely nothing. At six weeks old, it became apparent that these episodes weren't letting up, and Liv was admitted to the hospital for nearly one week, completing every test under the sun. After several episodes in the hospital it was confirmed that our tiny, six-week-old daughter was having seizures. Liv was diagnosed with epilepsy.
Over the past year and a half, Liv has undergone countless tests and hospitalizations to continue to monitor her brain activity; we have had our entire exomes sequenced to rule out genetic causes; she's changed medications and has been poked and prodded more times than anyone in life deserves. We, like 50% of those with those with epilepsy, still don't know the cause.
Today, Liv is a thriving, happy, feisty, little girl who lights up every room she enters. There isn't a day that goes by that we A) aren't beyond grateful for where we are in this very moment and B) worried sick about what can happen at any given moment. Epilepsy is an often misunderstood, stigmatized, and downright terrifying disorder, that comes along with so much uncertainty. We're passionate about changing this unfortunate narrative and moving epilepsy research forward.
Progress for those 65 million people with epilepsy worldwide is unacceptably slow. In fact, epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's combined - YET RECEIVES FEWER FEDERAL DOLLARS PER PATIENT THAN EACH OF THESE.
By running this race, we are raising funds for Liv. We are raising funds for families like ours, so no one has to feel as alone as we have felt over the past year and a half. We are raising funds for those who continue to have seizures every day, multiple times per day, without reason or relief from medication, and with detrimental effects. We are raising funds to find a cure for this disorder that needs so much more attention than it's currently getting.
Race day is Sandra's 36th birthday -- her "double Chai." In Judaism, Chai is the Hebrew word for "life" and refers to the number 18. It's common for Jews to make gifts or charitable donations in multiples of $18, to signify Chai or life. Please consider making a donation of $36, or what you can (in a multiple of 18, or not), to support us in this race. It's also not lost on us that Liv's name means life, so it really is a double, or triple, Chai occasion. Anything you give is so greatly appreciated.
Thank you for your love and support in this race and always.
Sandra, Andrew, Temma & Liv
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