Encephalitis can strike anyone, anywhere, at any time, and at any age, resulting in a serious and sometimes life-threatening medical emergency. It is an invisible threat that impacts thousands of individuals each year.
Patients are often misdiagnosed, resulting in delayed treatment, decreased recovery potential, and worse quality of life outcomes. Funding is needed to dramatically increase efforts in research, awareness, and advocacy.
Thanks to your generous contributions over the past decade, Encephalitis411 has directly helped thousands of encephalitis patients, caregivers, doctors, and other community members across the U.S.
who we honor
The story of Encephalitis, nicole, and thousands of patients each year
It’s hard to imagine that you could be walking around with a clean bill of health when you’re suddenly struck by a life-threatening neurological illness.
A loved one gasps. She finds you in the midst of a seizure and calls 911. Suddenly, you’re being rushed to the hospital where doctors attempt to quickly establish a diagnosis and stabilize your decline.
But it’s too late. You’re in and out of consciousness—stirring awake just long enough to feel the pinch of a needle entering your lower back for a spinal tap—when you succumb to the severe swelling in your brain. Days later, shocked friends and family are coming together to mourn your dramatic and unexpected death.
This is the heartbreaking story of thousands of encephalitis patients across the globe each year. And it’s also the story of Nicole Seiler, a beloved 12-year old from California who tragically passed away in 2011. Devastation rippled across her community, as detailed in her story here.
However, her mother, Suzanne Spector, and her twin brother, Michael Seiler, transformed their grief into action by creating Nicole’s Challenge: The Walk to Cure Encephalitis. Determined to spare other families the agony of losing a loved one to the disease, they provided Encephalitis411 with the seed money to become an established 501(c)(3) nonprofit organization and have continued to fundraise relentlessly for over a decade.
We continue their legacy, pay tribute to Nicole, and honor the stories of those impacted by encephalitis each year through hosting this annual event. See our In Memoriam page dedicated in loving memory to all those who have lost their lives to this life-threatening illness.
why we fundraise
the devastating impacts of encephalitis
Not all cases of encephalitis are fatal. But depending on the cause, the mortality rate is as high as 40%. And for those that survive, recovery isn’t achieved by the time of hospital discharge. Encephalitis leaves survivors with an acquired brain injury that can take years to recover from, with many falling short of making a full recovery.
The overall disease burden is high—not just for survivors but caregivers, families, the medical system, and beyond. It is not uncommon for families to crumble under the immense emotional and financial strain, particularly in those faced with the reality of permanent disability and lost earning potential.
Yet most suffer in silence. 20,000 people are diagnosed with encephalitis in the U.S. each year, yet 8 in 10 people don’t even know it exists. Symptoms can be invisible to casual observers, leading to negative psychosocial impacts. Lack of awareness extends even to medical professionals: patients are often misdiagnosed, resulting in delayed treatment, decreased recovery potential, and worse quality of life outcomes.
Fortunately, this is a solvable problem. While a cure may remain a dot on the horizon, we are certain that we can raise the bar significantly higher on average recovery outcomes today.
That’s why Encephalitis411 was founded. Our mission is to improve the quality of life for those impacted by encephalitis—not just for the future, as we work towards a cure; but for those impacted TODAY, who are often struggling to achieve optimal recovery outcomes.
But we need your help. To increase our impact in research, advocacy, and awareness, please join us in the challenge as a walk participant, fundraiser, or donor.
your dollars at work
Encephalitis411 has packed a lot into 5 short years, directly helping thousands of encephalitis patients, caregivers, doctors, and other community members across the U.S.
We’ve got compassionate boots on the ground who field daily hotline calls from those in immediate distress. We’ve got determined fundraisers without whom our research collaborations with UCSF, John Hopkins, and UTSW would be impossible. We’ve got consummate board members who work closely with our network of esteemed medical faculty, which includes representation from the only 3 encephalitis centers in the U.S. And we’ve also got passionate volunteers—many who are survivors themselves—who fill in the gaps in helping us facilitate our webinars, support group meetings, and other services.
None of this work would be possible without your generous contributions. We are proud of what this community has accomplished together. But we also recognize that many needs of the community remain unmet, with patients who are still falling through the cracks and not reaching their highest recovery potential.
In order for us to strengthen the depth of our services, improve awareness, and accelerate the drive to find a cure, we need your help. Our 2022 event is the special 10th anniversary edition of Nicole’s Challenge: The Walk to Cure Encephalitis, and we aim to recruit participants across all corners of the country. No one should have to suffer like Nicole and her family.
We urge you to consider how you can be a part of the solution. Can you join us for the walk? Can you help us fundraise? Or can you make a donation—even just the cost of a coffee from Starbucks? Your contribution will help us increase our impact and achieve our mission to improve the quality of life for those impacted by encephalitis.
Your support is critical to helping improve the quality of life for those impacted by encephalitis. Thanks to your generous contributions over the past decade, Encephalitis411 has directly helped thousands of encephalitis patients, caregivers, doctors, and other community members across the U.S! We appreciate your support for 2022.
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