Cameron’s family and friends have partnered with CURE Epilepsy to maximize their fundraising and awareness efforts. Your tax-deductible donation to CURE Epilepsy will be recognized as a contribution in memory of Cameron. Donations will be used for SUDEP and epilepsy research to investigate causes and prevention of seizures. We hope you will consider giving to Hope4SUDEP.
This effort started as a commitment to support a specific multi-year research grant in 2012. Please take a moment to read about this research by Edward Glasscock, PhD (2012) and Kristina Simeone, PhD (2016). These grants take a deeper look into the mechanisms and triggers of SUDEP. We continue to support SUDEP research funded by CURE Epilepsy, and as of year-end 2024, we are fortunate to have raised over $848,000 for Hope4SUDEP .
The Facts
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Facts about epilepsy
1. More than 3.4 million Americans, 470,000 of them children, have epilepsy. One-third of those with epilepsy do not respond to current treatments.
2. 1 in 26 Americans will develop epilepsy in their lifetime.
3. 1/1000 people with epilepsy die every year of SUDEP; these deaths are estimated to account for up to 18% of all epilepsy-related deaths.
4. Very few research dollars are used toward the study of SUDEP due to underreporting of deaths from SUDEP. A database is needed to support awareness and education.
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Ways you can help make a difference
1. Share my awareness campaign
2. Contribute financially to research projects by clicking here
3. Sponsor or plan an event to benefit Hope4SUDEP
4. Learn more and become an advocate
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Important things to know about epilepsy
1. Epilepsy is a diverse group of neurological disorders characterized by recurrent seizures. It can be genetic in origin, or can be caused by trauma or infection. Someone with two or more unprovoked seizures is considered to have epilepsy.
2. Epilepsy affects more people than multiple sclerosis, muscular dystrophy, Parkinson’s disease, and ALS combined. Yet, despite its prevalence, epilepsy receives less federal funding per person compared to these other brain disorders, which leads to critical gaps in research.
3. In addition to the immediate physical burdens imposed by the disease, the millions of people living with epilepsy face other challenges like accessing high-quality healthcare, learning about and coordinating medication(s), accessing vocational training (and other community services), living independently, and dealing with the stigma and public misunderstandings that can accompany epilepsy.
4. This is a time when rapid breakthroughs in research are more possible. Donating to epilepsy research is more important than ever.
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Wishes for my family
1. My story will be shared to protect other friends and family members worldwide from experiencing the loss of a loved one to SUDEP
2. That my mission will be supported to bring meaning to my life, my family’s despair and advancement in the knowledge of SUDEP
3. That you will join their matching gift program to further benefit the cause
4. Through research, awareness, and an increase in the database of useful information, the life of another child will be spared
If I Had Only Known…
A Letter From Cameron Benninghoven
It’s my mission to increase awareness and stimulate further research about SUDEP.
My name is Cameron. At 36 years old, I was in the prime of my life; financially successful and seemingly the picture of good health.
Sure, I had epilepsy, but medication managed it very well! In fact, I had very few seizures during the 20 years I was diagnosed with epilepsy.
On the night of November 4, 2009, however, I went to bed as usual, and never awoke. The doctors called it SUDEP – Sudden Unexplained Death in Epilepsy.
If I could change things, I would want to better understand the seriousness of my disease, and to protect myself and the people I left behind. That’s why I’m making it my mission to increase awareness and stimulate further research about SUDEP.
My dream, shared by my family and loved ones, is to raise funds to support research leading to the prevention of SUDEP, a cure for epilepsy, and an increase in the database of useful information. I hope you will support me in my mission by doing one or more of the following four ways to support Hope4SUDEP:
1. Share my awareness campaign with 4 of your friends and relatives; ask them to share this information with 4 of their friends, and so on.
2. Contribute financially to projects by clicking here; all amounts are greatly appreciated.
3. Sponsor or plan an event to benefit Hope4SUDEP. Email hope4sudep@yahoo.com for more information.
4. Learn more about epilepsy and SUDEP and become an advocate.
By sharing my story, I hope to spare others from SUDEP. If I had known more about SUDEP, I might be alive today. Please pass along my story.
Thank you.
-Cameron Benninghoven
Donate To Support SUDEP Research
2024 Donor Honor Roll
Grand total: $80,044.15
- Ellen Benninghoven and Michael Schafer
- Marty Buckhart
- KC Coats
- Kelley Decker and Tim Foufas
- Thomas and Nancy Flood
- Sally and Fred Flosi
- Deirdre Henderson
- Katie Kitchen and Paul Kovach
- Jeffrey Knupp
- Joanne P. Miller
- Anne and Kyle Rockey
- David Russell
- Joshua and Jennifer Schafer