"Today is the day so many of us have dreamed of and prayed for. From now on, no mother will sit in a hospital or doctor’s office and be told there is no treatment for Alexander disease. That precious three-year-old girl now has hope—hope for a therapy that can change the course of her life. And her parents will have the gift of watching her grow."
- Jennifer Pearson (Elise's Mom)
Creating a support network for individuals, families, and friends affected by AxD.
Elise’s Corner is dedicated to spreading awareness of Alexander Disease (AxD) by:
$214,000
$200,000
$100,000
$700K has been donated this year to Elise’s Corner Field-of-Interest Fund at Akron Community Foundation to help find a cure for Alexander Disease.
When Elise’s parents, Christopher and Jennifer Bonsky, received word of her diagnosis on that fateful Thursday morning in mid-November 2014, they were left feeling utterly devastated, helpless, and alone. Hearing the news that their seemingly healthy 3-year-old daughter had a serious neurological disorder known as Alexander disease – one that would eventually strip her of everything that made her the energetic, carefree, sweet child that she was that day – was too much for any parent to process.
After taking some time to sit with the diagnosis, Chris and Jenny realized they had two things going for them – two simple things that could (and would) power a movement. These things were love and hope. Love for their daughter Elise; a crazy, deep, and all-consuming love. Hope for a future; the kind of hope needed to get closer to a cure and raise the funds and awareness necessary for such a thing.
That is how love and hope became the foundation of this foundation, Elise’s Corner. The progress made over the past decade has been nothing short of incredible, yet it is still not enough, and it will likely never be enough.
It will never be enough until the day another beautiful, blue-eyed girl walks into a doctor’s office alongside her parents and is diagnosed with Alexander’s disease; yet instead of going home to enjoy the remainder of her days, she and her family are pointed in the direction of a treatment or a cure that will save her precious life.
Please join us as we advocate for the day newly diagnosed patients and families will no longer have to bear the unimaginable weight of this disease. In the meantime, just know we are forever full of love and hope for the future, no matter what Alexander’s disease throws at us.
Elise’s story continues to evolve as she lives her best life every day. As we look back, she has been living with this disease for a decade and it is still as if a light follows her wherever she goes – people continue to be easily drawn into her world by her easygoing, happy demeanor, constant smile, and infectious laugh. Elise is now officially a teenager, and that comes with some spirited discussions at times! She has truly developed her own teenage personality – one that goes far beyond her diagnosis.
