The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
As his mom, Brenna, describes him, “Rama’s best gifts have always been his sweetness and compassion to animals. He has always been a creative kid, telling stories with his Legos, doing art, and climbing trees.” In this three-part post, we hope you will enjoy getting to know Rama and his family’s story, as relayed by …
As his mom, Brenna, describes him, “Rama’s best gifts have always been his sweetness and compassion to animals. He has always been a creative kid, telling stories with his Legos, doing art, and climbing trees.” In this three-part post, we hope you will enjoy getting to know Rama and his family’s story, as relayed by …
As we begin a new year we want to share a story with you. It is the story of a cute Colorado kid named Rama. We hope the detailed experiences of Rama and his family will offer personal insights that each of us can understand. The family moves from confusion to diagnosis to care to healing …
This blog post provides guidance on diagnostic testing for autoimmune encephalitis, including answers to common questions and and additional resources for families and patients. Please be sure to review the disclaimer at bottom. If you have additional resources or are told something different, please let us know so we can provide the most up to date and …
As we are in the midst of the holiday season, what better way to celebrate than with a survivor’s story. We are grateful for Brittany’s willingness to write about her illness trusting that it might give some peace (especially this time of year) to the AEA community. MY DARK WINTER By: Brittany DiCapua They say that …
The AE Alliance turns 3 years old today! Three years ago on this date, two families that had kids with AE came together in hopes that they could start something to help others suffering from this little-understood disease. The vision was to not only disseminate information to help patients but also to give support to …
The Autoimmune Encephalitis Alliance is holding a strategic meeting on December 15. The board of directors and invited advisors are gathering in Durham, NC, with the goal of the thinking strategically regarding the organization. Based on this group’s recommendations, we expect to continue to set up structures that will empower the AE Alliance to increase …
The first Tuesday in December has become a world-wide call for people to celebrate the art of giving; a joining of communities to “give rather than receive.” Please visit donate to AE Alliance to support our work. If you choose to give please put the hashtag “#GivingTuesday” in the “Public Recognition” field of the AE Alliance site …
As all of us who have been affected by AE know, the holidays can be filled with mixed emotions. Some of us are just settling into our role as caregiver, some are seasoned in giving of ourselves in support of someone with AE, and some of us long for the time when we were comforting a …
As we look to expand our outreach, the AE Alliance is excited to announce we have retained the strategic development consulting firm moss+ross. Our goal is for moss+ross to guide us through developing a more comprehensive business plan, and provide insight into funding strategies to implement new organizational strategic goals. moss+ross provides fundraising and planning …
