in 2014, the Bonsky family heard the word leukodystrophy for the first time when a febrile seizure in their three year old daughter led to MRI and a diagnosis of a form of leukodystrophy known as Alexander Disease (AxD).
For Jenny and Chris Bonsky, it was impossible to imagine how the little girl who loved dressing up like Disney princesses, playing with her cat Blue, and was an adoring big sister to their youngest daughter, Emmersyn, could have a terminal illness.
What was even more astounding to the Bonskys was that there was no funding or research related to the condition.
While several organizations supported leukodystrophy, no one was advocating solely for AxD. As an ultra-rare disorder, Chris recalls, “Alexander disease was an orphan among orphaned diseases.”
Jenny and Chris Bonsky were in a race against time to help their daughter, and they would become AxD’s champions.
Within weeks of Elise’s diagnosis, the Bonskys reached out to Amy Waldman, MD a pediatric neurologist at the Children’s Hospital of Philadelphia (CHOP) who treated leukodystrophy patients and Albee Messing, PHD, a researcher at the University of Wisconsin who had been studying the how GFAP mutations and accumulation affect Alexander disease patients.
After attending the first gala to benefit the Leukodystrophy Center of Excellence at CHOP with Jim and Jill Kelly, the Bonskys organized the Love |Hope | Cure Gala in Akron, Ohio in the fall of 2015. They understood getting a treatment for AxD would take substantial funding. They even enlisted the support of Akron’s favorite son, LeBron James, who took time to meet with Elise and donated many autographed items for the first event.
In late 2015 – after being brought together by the Bonsky family - Professor Albee and Dr. Waldman believed a collaboration between CHOP and the University of Wisconsin’s Waisman Center would lead to a better understanding of the disease and clinical treatments. The Bonsky’s were laser focused on launching a natural history study at the Children’s Hospital of Philadelphia and moving Dr. Messing’s research to animal models and then clinical trials.
The goal was to raise $1 million and within two years, Elise’s Corner is close to reaching that ambitious goal.
Calliope Joy Foundation co-founder Pat Carr remembers meeting the Bonskys in May 2015: “When faced with this diagnosis , most people get immobilized by grief. “ Very quickly,” Carr recalls, “the Bonskys saw themselves as agitators and cheerleaders who were going to use every connection , every opportunity, to get this research moving.” The Bonskys took their inspiration from Amicus Therapeutic founder John Crowley, whose efforts to fund research for Pompe disease inspired the book The Cure and the film “Extraordinary Measures.”
Nearly three years later, Chris and Jenny’s work has resulted in tremendous hope. The Leukodystrophy Center at CHOP has expanded with their support, and researchers are making swift progress, progress that would not have been possible without the Bonsky family's leadership and vision.
Plans are moving forward on the second Love Hope Cure Gala on Saturday, October 6th. To date, nearly 40 AxD patients from all over the globe have travelled to CHOP to participate in the natural history study Elise's Corner funded.
Jenny Bonsky explains, “Three years ago, when Elise was diagnosed, we got a piece of a paper and a doctor told us not to look up her disease on the internet. I am so glad we did not take that advice, because we would never have found Dr. Messing and Dr. Waldman. Now, families with Alexander Disease have a team of people fighting for them every single day.”