who we are
Encephalitis is a rare disease. Few resources exist to provide reliable information and support for those in the U.S; even fewer organizations exist that bring together the expertise of passionate survivors and sophisticated medical faculty alike to deliver targeted services for the encephalitis community.
That’s what makes us different.
Encephalitis411 serves as a link between patients, caregivers, clinicians, scientists, and other related stakeholders. Together we are on a mission to improve the quality of life for those impacted by encephalitis.
That’s what makes us different.
Encephalitis411 serves as a link between patients, caregivers, clinicians, scientists, and other related stakeholders. Together we are on a mission to improve the quality of life for those impacted by encephalitis.
Importantly, unlike other U.S.-based encephalitis nonprofits, we support patients and families with any cause of encephalitis. When we can’t support a specific need, we consult our medical faculty and other alliances within the community.
Those of a certain age may remember the phrase, “What’s the 411 on that?” to elicit information and helpful resources from others. In keeping with that theme, Encephalitis411 strives to equip anyone impacted by encephalitis with the insight and support they need to manage their unique situation. We serve to empower the community. In addition to the resources we develop and curate—information packets, webinars, conferences, and more—we have an active hotline available to anyone in need of further guidance.
Those of a certain age may remember the phrase, “What’s the 411 on that?” to elicit information and helpful resources from others. In keeping with that theme, Encephalitis411 strives to equip anyone impacted by encephalitis with the insight and support they need to manage their unique situation. We serve to empower the community. In addition to the resources we develop and curate—information packets, webinars, conferences, and more—we have an active hotline available to anyone in need of further guidance.
Our origins
Encephalitis411 was established as a 501(c)(3) organization in 2017.
However, our origins stretch back almost 7 years earlier to when founders Becky Dennis and Bob Morris met while serving on the board of Encephalitis Global. As two encephalitis survivors united in their passion to help others, they began conceptualizing an organization that would bridge the distance between survivors and clinicians, fund research, inspire hope, and accelerate change throughout the encephalitis field.
This idea was officially brought to life by Becky, Bob and Sunny Stephens and with generous support from the esteemed Dr. Carol Glaser—known, amongst many things, for being the Principal Investigator on the landmark California Encephalitis Project. Seed money to help lift Encephalitis411 off the ground was provided through fundraising efforts by the family of one of Dr. Glaser's patients, Nicole Seiler.
Nicole tragically passed away in 2011 only days after being diagnosed with encephalitis. Determined to spare other families the agony of losing a loved one to encephalitis, her mother, Suzanne Spector, and her twin brother, Michael Seiler, started a walk to raise awareness and funding for the disease. Encephalitis411 honors her memory as well as the stories of other encephalitis survivors each year through Nicole's Challenge: The Walk to Cure Encephalitis.
However, our origins stretch back almost 7 years earlier to when founders Becky Dennis and Bob Morris met while serving on the board of Encephalitis Global. As two encephalitis survivors united in their passion to help others, they began conceptualizing an organization that would bridge the distance between survivors and clinicians, fund research, inspire hope, and accelerate change throughout the encephalitis field.
This idea was officially brought to life by Becky, Bob and Sunny Stephens and with generous support from the esteemed Dr. Carol Glaser—known, amongst many things, for being the Principal Investigator on the landmark California Encephalitis Project. Seed money to help lift Encephalitis411 off the ground was provided through fundraising efforts by the family of one of Dr. Glaser's patients, Nicole Seiler.
Nicole tragically passed away in 2011 only days after being diagnosed with encephalitis. Determined to spare other families the agony of losing a loved one to encephalitis, her mother, Suzanne Spector, and her twin brother, Michael Seiler, started a walk to raise awareness and funding for the disease. Encephalitis411 honors her memory as well as the stories of other encephalitis survivors each year through Nicole's Challenge: The Walk to Cure Encephalitis.
encephalitis global
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Encephalitis411 would not exist as it does today without Wendy Station (1955-2020; 1999 herpes simplex encephalitis survivor), a fierce patient advocate responsible for bringing encephalitis patients and caregivers together in the early days of the internet. She was passionate about ensuring no one felt alone. Without the launch of her non-profit Encephalitis Global in 2002 and without her relentless efforts to connect those impacted by encephalitis, many of us would not have met.
Encephalitis Global and Encephalitis411 would often partner in organizing events including the Friends and Caregivers, Encephalitis Survivors (FACES) Conference. With this history, close relationship, and overlapping membership, Wendy made arrangements before she passed away in 2020 for Encephalitis411 to become the beneficiary of her work through Encephalitis Global. Her lasting legacy and spirit live on in the robust community we have today. |
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Anyone who was previously a part of the Encephalitis Global community will recognize familiar faces at Encephalitis411. Please join us on the Encephalitis411 forums at inspire.com or Facebook, and keep your eyes open for future opportunities to reunite with FACES friends in person.
Our Impact
Encephalitis411 has helped thousands of people impacted by encephalitis. We are proud to have a reach that spans across patients, caregivers, and medical professionals across the entire U.S. and beyond.
We feel fortunate for what we have accomplished together with the community since our early days! Some of our most impactful activities in just the past few years include:
Research
We feel fortunate for what we have accomplished together with the community since our early days! Some of our most impactful activities in just the past few years include:
Research
- Supporting research trials with Johns Hopkins, UT Southwestern Medical Center, Stanford University, University of St. Augustine
- Funding a research project with University of California San Francisco (UCSF) to study the cerebral spinal fluid of 250 encephalitis patients, look for enteroviruses using advanced sequencing technology, and identify novel biomarkers. Publication results forthcoming
- Launching a free service for treating physicians with hospitalized, complex patients enabling them to receive guidance from Encephalitis411 medical experts
- Hosting presentations at hospital neurology departments to educate them about encephalitis
- Co-founding the World Encephalitis Day Alliance to deliver educational activities and increase awareness through World Encephalitis Day (February 22nd)
- Reaching hundreds of thousands of people via Facebook with educational and supportive messages
- Fielding more than 300 urgent hotline calls in the past year
- Handling several crisis situations, saving lives through our interventions
- Hosting hundreds of patients and caregivers at in-person and online events, providing them with direct access to leading experts in the field
- Reaching 4,950 people at a half-day event via Facebook Live
- Publishing educational webinars on our Encephalitis411 YouTube channel
Encephalitis411 board members with encephalitis experts from across the globe
World Encephalitis Day alliance (WEDA)
Encephalitis411 is proud to be part of the World Encephalitis Day Alliance (WEDA). WEDA was founded as a group that aims to create a world that understands encephalitis and its long-term impact.
We held our first joint conference together in Dallas, Texas in 2020 and coordinate a series of activities together each year in honor of World Encephalitis Day, February 22. In 2023, our theme was to "shine a spotlight on encephalitis." Our 2024 conference will be held at the Mayo Clinic in Jacksonville, Florida. See the Events page for more information.
If you would like to be a part of future campaigns , simply email [email protected] and indicate your interest in helping to raise awareness. In particular, we are looking for individuals who would like to share their story or submit a request to their local landmark to light up in red.
We held our first joint conference together in Dallas, Texas in 2020 and coordinate a series of activities together each year in honor of World Encephalitis Day, February 22. In 2023, our theme was to "shine a spotlight on encephalitis." Our 2024 conference will be held at the Mayo Clinic in Jacksonville, Florida. See the Events page for more information.
If you would like to be a part of future campaigns , simply email [email protected] and indicate your interest in helping to raise awareness. In particular, we are looking for individuals who would like to share their story or submit a request to their local landmark to light up in red.