The Moore Family Fund:  Taking Flight

April 17, 2019 will be forever marked as the day of Cormac's first seizure and a day of great sorrow.  But as many of you know, April 17th is also the birthday of our oldest son Owen.  And as I have written before, it is therefore a day of great joy.  Sadness and exuberance. The darkness and the light.  We need both to shine.  And despite the difficulty of being thrust into a journey that we would not have chosen, we have been the beneficiary of so much love and support that the light is overcoming the dark.  Last year, thanks to the generosity of our friends and family, we were able to share the light and give over $10,000 to CURE Epilepsy, an organization who promotes epilepsy research and funds scientists who are making strides to bring answers to light, answers that we are desperate for to help understand Cormac and his brain.  Copy and paste this link (https://www.justgiving.com/fundraising/holiday-splurge) to read Cormac's story or continue on to see where we are and where we are heading.  

The story is not over but this year, we entered a new chapter.  This year we celebrated one year of seizure freedom.  It's a success with footnotes, with caveats, with hesitation.  Cormac's tough exterior hides the challenges of living with a chronic health condition that could come roaring back without notice.  His desire to be like everyone else, to blend in, to be the Cormac he once was, masks all that he battles.  

On a recent podcast, the guest described epilepsy as a cruel condition.  There are no truer words.  Epilepsy wreaks a peculiar kind of havoc.  The foundation on which we all rely to go about our lives - the notion that we are in control of ourselves and our body - is thrown out the window with epilepsy.  Patient and caregiver are thrust into a world that is topsy-turvy, unstable, and could change at any time.  One minute standing, the next on the floor.  The brain taking over the body.  It's hard to understand until you witness it - the body subject to a brain on fire.  And once the brain resets, the body is back, largely to normal, subject to any injury sustained during the seizure.  Everything looks fine except it is not.  

As strong as Cormac looks, nothing is the same.  Whether the medication, the seizures or just biology and genetics are to blame, everything is harder for Cormac now.  School struggles that bordered on average are now much greater.  Behavior challenges that remained within age appropriateness are now borderline.  Speech and language issues are amplified, attention issues magnified, coordination and agility negatively impacted.  All of this is set against the back drop of a medical issue that is not fully understood.  The more we learn about seizures and epilepsy, the clearer it becomes that this is a whole brain issue - the seizures as a symptom of something more.

Desperate for further understanding and answers, we have chose to direct this restless energy into a commitment to raise money for epilepsy research for a second year in a row.  This year, however, the stakes are higher.  

Specifically, your contribution will be directed to The Moore Family Fund - a multi-year fundraising effort to reach $100,000.  Once reached, the Moore Family Fund will be given as a $100,000 Taking Flight Grant.  The Taking Flight Grants seek to promote the careers of young epilepsy investigators to allow them to develop a research focus independent of their mentor.  The grant dovetails with what we care most deeply about, what seems most reflective of Cormac - young, innovative, and independent thinking to reconsider some of the longest standing issues in epilepsy and whole brain research.  We could not be more excited to support these efforts through The Moore Family Fund.  

Each epilepsy patient's journey is unique.  There are so many types of seizures that present so differently for various reasons.  But what all those who suffer from seizures share is a common need for greater understanding, greater research, greater funding and greater awareness of seizures and whole brain function.

Because we recognize how lucky we are to have Cormac, to have him seizure-free, to have him in school and sports, to have the resources to access the best physicians and hospitals in the country, to have the loving support of family and friends - this is why we are compelled to fundraise for epilepsy research and the The Moore Family Fund.  Your generosity and support inspire us to keep pushing for answers and to continue looking toward the future with hope.  Please consider a donation to this effort this holiday season.

So much love and gratitude,

The Moore Family

Please mail any checks to CURE Epilepsy at PO Box 10572, Chicago, IL 60610 or contact Brandon Laughlin from CURE Epilepsy at 312-589-5569 to arrange other donation options.