Help to Raise Awareness for Autoimmune Encephalitis
by Jodi Matthews
$500.00
FUNDED
Campaign has ended
Hey everyone! Thank you so much for visiting my page. I am fundraising for Nicole's Challenge: The Walk to Cure Encephalitis. It's a virtual walk. We have a friendly competition going between Team Infectious Encephalitis and Team Autoimmune Encephalitis (that's me) to see which team will raise the most funds.
So, I'll start by sharing a little of my story. On Labor Day in 2015, I was at the lake and having fun. The following week, I couldn't walk, had trouble speaking, lost coordination, slept 20 hours a day, and was catatonic during many of my waking hours. It wasn't until 15 months later that I was diagnosed with autoimmune encephalitis. It took another eight months for insurance to approve treatment.
Autoimmune encephalitis involves inflammation of the brain. The immune system mistakenly attacks healthy brain cells, which leads to neurologic and psychiatric symptoms. The disease is rare, complex, and relatively new. Although there have been advances over the past 7-10 years, it often goes undiagnosed and untreated. Early diagnosis and early treatment are critical for the patient. For optimum recovery, treatment should be given within 6 weeks of onset. In my case, and so many others, treatment was delayed for months, and even years.
I'm fundraising to raise awareness for the disease - awareness in the medical community for early diagnosis, in the insurance industry for approved treatment, and among the general public for understanding and acceptance.
If you'd like more information about the organization:
https://www.encephalitis411.org/nicoles-challenge-fundraiser.html
If you'd like to donate, there is no minimum required. If you'd like to walk alongside me in this challenge, I'd love to have your company.
Nicole’s Challenge: The Walk to Cure Encephalitis is Encephalitis411’s signature fundraiser. For this year's special 10th anniversary edition, the theme of the challenge is Wipe Out Encephalitis.
From July 28-September 30, we invite you to join us in honoring the stories of those impacted by encephalitis, continuing the legacy of Nicole Seiler and her philanthropic family, and advancing encephalitis research, advocacy, and awareness efforts.
For some, encephalitis is fatal. Nicole tragically passed away in 2011 only days after being diagnosed with the disease. For survivors, encephalitis is a stubborn beast. It leaves its victims with an acquired brain injury that can take years to recover from, with many falling short of making a full recovery.
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 accomplish this.
We urge you to consider how you can be a part of the solution. Can you join us as a walk participant? Or can you make a donation—even just the cost of a coffee from Starbucks? Every little bit makes a difference.
Over the past decade, your generous contributions have enabled us to directly help thousands of patients, caregivers, doctors, and other community members impacted by encephalitis. Some of our most impactful services include a free support hotline, online and in-person support groups, educational webinars, and research collaborations with UCSF.
More information can be found on our Nicole's Challenge: The Walk to Cure Encephalitis homepage. For media, comments, or inquiries, please email [email protected]
Your registration or donation today will help us increase our impact and ensure that we can continue to help thousands more into the future. Click "Donate Today" at the top of the page to get started.
Under "Select Fundraiser" please indicate the person who recruited you to the challenge; or, if their name is not listed, select either "**Team Infectious Encephalitis**" or "**Team Autoimmune Encephalitis." These teams are engaged in a friendly competition to see who can raise the most funds.
Thank you!