The Founders Circle

The Kallaos Family, The MITO Fund

The Kallaos Family

For William Kallaos and his wife Connie, the battle against mitochondrial disease has always been personal. 

Their granddaughter, Olivia, was diagnosed with Leigh syndrome in 2013, a severe mitochondrial disease that causes neurological, heart, kidney, vision, and breathing complications.   

The founding gift to The Mito Fund, William said, is about one thing: finding a cure for mitochondrial disease. 

“There’s a family we all belong to -UMDF- and we are bonded together. Everyone’s life has been changed,” said William. “That has given us a determination and a focus to do everything we can to find a cure.”

Despite her diagnosis over a decade ago, Olivia, now a teenager, fights on, with help from her loved ones. Along with her grandparents, she and her father Bill Jr., mother Bonnie, and brother Liam, have become leaders in the mitochondrial disease community, giving (and raising) significant funds, attending numerous events, and volunteering across the country – in addition to Bill Jr. serving as a UMDF Board Trustee since 2017.

William said The Mito Fund appealed to him not only as a grandfather of an affected patient, but also as a more efficient method to incentivize the scientific community to help develop a cure.

“When it comes to this idea of finding partners who would have our same motivation coupled with a financial interest, it just made sense to me. I like the thought of pushing the minds of science with meaningful financial resources to plow ahead and eradicate this disease.”

The Wright Family

For Dan and Pat Wright, the priority has always been clear. “We would like to see a world where we have a cure for mitochondrial disease, where nobody needs support, and one where we all go about worrying about something else,” said Dan.

Their daughter, Kelsey, lost her battle with mitochondrial disease in April 2015. She was 34.

Like many patients dealing with mitochondrial disease, Kelsey’s diagnostic journey was long and arduous. Her symptoms – seizures, involuntary muscle contractions, vision issues — started as early as age three. It would take another ten years before she would get a diagnosis of the mitochondrial disease Leber’s hereditary optic neuropathy plus. (Some years after her death, researchers would later reclassify her diagnosis to Leigh syndrome, a mitochondrial disease known for attacking the central nervous system.)

After the diagnosis, the family sought out medical experts and anyone they could speak with about Kelsey’s condition. That’s when UMDF entered the picture, providing Kelsey and her family support, education, and the occasional strong shoulder to lean on.

Amongst fellow mito patients and families in UMDF support groups, Kelsey found her passion. She loved to raise awareness for mitochondrial disease and sent out countless UMDF ‘Energy Bands’ in an effort to do so.

Despite having a devastating disease, Kelsey went on to graduate from Midwestern State University Summa Cum Laude with a Bachelor’s Degree in Business Administration. When she wasn’t rooting for her beloved Atlanta Braves, she enjoyed being with her family, skiing and swimming.

“She lived in the moment,” said Dan. “Kelsey appreciated things in life and wasn’t as easily distracted as the rest of us are today. She was great example for all of us.”

Kelsey’s passion to raise awareness and funding for research is something the Wrights continue to move forward, including a founding gift to The Mito Fund.

“Kelsey loved the thought that things were happening to help her. That gave her hope,” said Dan.

“If we’re ever going to find drugs and treatments, these companies have to get funded. The Mito Fund is one way to do it, and it’s a long game. It’s not easy. Still, if no one ever does it, it never gets done.”

The Wright Family, MITO Fund

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