This Rare Disease Day, and in honor of Brain Awareness Month, HESA and AE Alliance have come together, to kick off our #AskMeAboutAE campaign, visualizing the consequences of autoimmune encephalitis. No one understands the daily struggles like you and your caregivers. You experience the consequences of AE every day. It is important to talk about …
Only a few more days till World Encephalitis Day! WED is a great day to raise awareness for AE. Take a photo of yourself wearing RED and post it to your social media with the #RED4WED on Monday, February 22nd. WED is also a great starting point for raising AE awareness all year round. Raising …
We have had the pleasure of having Dr. Joe Lindley speak at our South Support Group meeting in January. Dr. Lindley is a holistic health practitioner who has been in practice for over 40 years. He is a chiropractor, acupuncturist, and applied kinesiologist who utilizes homeopathy, therapeutic nutrition, and mind-body balancing techniques with his patients. …
We are looking for volunteers to help us manage our online Smart Patients AE community. All you need is a computer, an internet connection, and a passion for helping others affected by AE. The Smart Patients online AE community provides our AE community with a safe online platform to connect with others, from anywhere, at …
For many AE patients and family members, time seems to stand still during the long hours spent in the hospital, infusion centers, traveling, or even at home while recovering. Listening to music is not only a great way to pass the time, but it can take you to a ‘different’ place, ease your mind and …
Our online AE Smart Patients Community has undergone a make-over, making it even easier to search by topic and connect. You can join the community for free to share, interact, and learn from others affected by autoimmune encephalitis in a safe, supportive environment. We started working with Smart Patients in September 2018 to provide our …
AE and Learning by Alex (AE Survivor) What am I to say? If anything, I want readers to know how AE affects yet another person, writing a blog and (I’m crossing my fingers on this) what a parent, friend, colleague, or, most of all, those in the throes of the illness can take away and use …
Meet Lisa! (Video production by Jack Chipman, www.jchipman.com) On Saturday, March 6, 2021, AE Alliance will organize the 9th annual Florence Forth run/walk in Durham, NC and kick off the first virtual Florence Forth run! Will and Leslie McDow started the Florence Forth run’/walk to commemorate the day that their six-year-old daughter Florence died …
Steve! It’s Mom. I don’t know what’s going on. Joseph woke up having seizures this morning. He’s at the hospital. I’m on my way there now. Call me!” I would listen to this harrowing voicemail about an hour after it was received. Mom was right. Suddenly, Joe was having seizures when he’d never had them …
Greetings AE Family & Friends, We are excited to unveil a beautiful new card series, Lily’s Journey Back, for purchase in support of the Autoimmune Encephalitis Alliance. Sixteen-year-old Lily Westerkamm, for whom the card set is named, was only fourteen when she was diagnosed with AE. During her treatment at Riley Hospital for Children at IU …
