Elise McKenna Bonsky was born happy and healthy
As a result of a minor virus – accompanied by a high fever – Elise suffered multiple seizures, was hospitalized, and was diagnosed with a seizure disorder via EEG
A precautionary MRI was performed on Elise to rule out any serious brain conditions — the MRI found grey matter in the basal ganglia portion of her brain; Genetic tests conducted with no additional issues confirmed
A regularly scheduled annual MRI was conducted – major changes in Elise’s brain were discovered
Doctors met with Elise’s parents, explaining that the changes discovered in Elise’s brain appeared consistent with Alexander Disease, a form of Leukodystrophy
Further genetic tests confirmed that Elise did, in fact, have Alexander Disease
The Bonskys’ traveled to Children’s Hospital of Philadelphia (CHOP) for the first time and met with Dr. Waldman and her staff at what would soon become the Leukodystrophy Center for Excellence
Through the support of their FirstEnergy colleagues, friends, and family, the Bonskys’ were gifted the $5,000 necessary to establish a charitable fund at Akron Community Foundation. Today, the Elise’s Corner Field-of-Interest Fund supports research efforts that will identify treatments, therapies, and ultimately a cure for Alexander disease and other leukodystrophies
An anonymous donor granted nearly $100,000 – in Elise’s name – to CHOP to help establish their Leukodystrophy Center for Excellence (LCE)
On Mother’s Day, Elise’s Corner launched their website — “Where Love and Hope meet to find a Cure”
The Bonskys’ traveled BACK to Philly for a gala hosted by the Calliope Joy Foundation in which CHOP announced the launch of their LCE. During the gala, Jim Kelly (whose son Hunter passed away from Leukodystrophy) launched footballs across hundreds of people in the Rittenhouse Hotel – all for the sake of raising money for Leukodystrophy. The events of this evening inspired Jenny to consider hosting a small fundraiser back home in Akron.
Elise’s Corner hosted their first “small” fundraiser — with nearly 500 people in attendance. The gala exceeded any and all expectations, raising over $300,000
Elise’s Corner granted $100,000 to CHOP for the following: Further development of the LCE, Support of Natural History & Outcome Measures Trial, Assistance in development and implementation of an AxD clinical trial
Elise’s Corner granted $100,000 to the Waisman Center at the University of Wisconsin for the following: Continued development of therapeutic approaches for preventing and reversing the symptoms of AxD, partial support of staff salaries, travel and other expenses associated with facilitating collaboration with other AxD experts worldwide
Elise’s Corner granted $50,000 to the University of North Carolina at Chapel Hill to support early stage drug discovery for compounds that disrupt GFAP aggregation in Alexander Disease
To further continue & expedite research efforts at Natasha Snider, PhD, the Waisman Center at the University of Wisconsin, Elise’s Corner granted $50,000
Elise’s Corner issued a $10,000 grant to the Calliope Joy Foundation to support travel expenses associated with families seeking treatment and/or participating in the Natural History and Outcome Measures Trial for Alexander Disease at the Children’s Hospital of Philadelphia
Elise’s Corner hosted their second fundraiser – an even bigger success than the first event — raising over $300,000
Additional grant of $50,000 gifted to CHOP in order to continue and enhance their Natural History and Outcome Measures Trial
Elise’s Corner issued a grant of $14,000 to cover expenses associated with an Alexander Disease Family Forum, hosted by the Waisman Center at the University of Wisconsin. Monies issued went to lodging expenses, speakers travel, and other needs associated with putting on the event.
Elise’s Corner established a formal board to approve all future grant requests. Board members include: Jim Pearson, Steve Staub, Jon Taylor, Mike Falen, Dr. Albee Messing, Dr. Natasha Snider, and Dr. Amy Waldman
Elise suffered the first major incident since her initial diagnosis — a seizure lasting more than 6 hours. It was truly the most terrifying day of our lives. We had no idea what Elise would look like after suffering such trauma. Luckily, her recovery was INCREDIBLE, and she bounced back (above her baseline even) and was able to do most of the things that she loves 2 months post-seizure.
Elise’s Corner granted $50,000 to CHOP for clinical trial readiness in Alexander Disease: defining outcome measures performed by Dr. Amy Waldman and team
Elise’s Corner granted $50,000 to The University of North Carolina at Chapel Hill to identify and develop a small molecule against mutant GFAP protein accumulation in Alexander Disease astrocytes researched by Natasha Snider, PhD, at the UNC School of Medicine
To further continue and expedite research efforts at the Waisman Center at the University of Wisconsin, Elise’s Corner granted $50,000
Elise’s Corner participated in a patient advocacy panel with Ionis Pharmaceuticals and other AxD family members to discuss symptoms, potential treatments, and other items relevant to further studies — and ultimately – a treatment for the disease.