Greetings!

Cameron was truly a man for all seasons: the excitement and energy of springtime, the richness and complexity of summer, the collecting and harvesting of autumn, and the wisdom and restfulness of winter. He was a unique young man—kind, caring, inclusive, and nurturing.

At age 16, Cameron had his first seizure. He was hospitalized for about 10 days while his doctors worked out his diagnosis, struggled to control his seizures, and established a routine of medications. Cameron was discharged from the hospital with a diagnosis of EPILEPSY. It was the first and last time Cameron was ever hospitalized for this complex disease. All of Cameron’s epilepsy care thereafter was done on an outpatient basis, occasional doctor office visits, and mostly phone consultations with his neurologist.

In contrast to so many others, for whom the story is very different, Cameron experienced only six to eight seizures his entire post-diagnosis life after starting his medications. He had some adverse medication side-effects, which would lead to him trying other medications; for the most part the medications he took appeared to be working.

Cameron grew into a beautiful young man. After graduating college, he became a successful businessman engaged in commercial real estate in Chicago. He was passionate about life and people. It is no wonder that one of his early admirers said Cameron had the wonder of a child and wisdom of an old soul.

During his early adult life, he did experience the occasional nocturnal seizure while he slept. But he could be aroused or awakened to quickly resume normal breathing and mental acuity. That is, until the night of November 4, 2009. Cameron said good night to his girlfriend on the phone and promised he would call her in the morning. No one heard from him again. In a second, Cameron died because of a seizure in his sleep.

He died six weeks short of his 37th birthday, and thus ended the life of the most wonderful son a mother and father could ever hope for.

We had never heard of Sudden Unexpected Death in Epilepsy – SUDEP. We always assumed he would remain healthy and functional if he stayed on his medications.

Shortly after Cameron’s death, we learned of Citizens United for Research in Epilepsy – CURE. Founded by Susan and David Axelrod in partnership with other distraught families, CURE’s mission is to find a cure for epilepsy, by promoting and funding patient-focused research for this poorly understood disease.

In 2010 we joined forces with the Axelrods and other families devastated by epilepsy and its deadly manifestations. Since that time, we have taken on the task of funding one research project through CURE every two or three years, depending on the grant requests and expected duration of the research through our fundraising initiative – HOPE4SUDEP.org. We have done this lovingly in honor of our son and best friend, Cameron, and have the warmest regards for those doing the research and great expectations for the fruits of their work. CURE’s research in this area has led to a potential genetic link to SUDEP, laying the foundation for promising new therapies that can help prevent these tragic deaths in the future.

As we honor the 10th anniversary of Cameron’s death to SUDEP, and as we share our story of love and loss with all those to whom this message will come, we ask you to join us in moving CURE’s mission forward. Please help us secure a brighter future for those afflicted with epilepsy and its various manifestations. During this season of giving, in Cameron’s honor, we humbly ask you to make a donation to CURE today. We extend our sincere thanks for your consideration.

In remembrance and hope,

Ellen Benninghoven

Cameron’s Mom

PS: Your contribution will go even further this season because a generous donor will match any new or increased contributions made by 12/31/19. Please donate today and bring us one step closer to a CURE.