EB RESEARCH PARTNERSHIP

"They bring a shared passion for our mission"

Epidermolysis Bullosa (EB) is a family of life-threatening and rare genetic disorders that affect the body’s largest organ: the skin. Individuals with EB lack critical proteins that bind the skin’s two layers together. Without these proteins, the skin tears apart, blisters and shears off, leading to severe pain, disfigurement and internal and external wounds that may never heal. The life expectancy for children with EB ranges from early infancy to only 30 years of age, and today there are no treatments or cures. The New York-based EB Research Partnership is dedicated to changing that. Since 2010, the EB Research Partnership has funded 120 projects, leading to 20 times more clinical trials, and raised over $50,000,000 for EB research. The partnership’s venture philanthropy model is leading the way not just for EB, but also pioneering the path to cures for more than 7,000 rare diseases which impact 10% of the global population.

“We got a twofer with YPTC,” exclaims EBRP CEO Michael Hund, referring to YPTC associates Craig Fox and Debbie Esterly who serve as the Partnership’s Controller and Accountant. “I inherited YPTC when I was named CEO in 2017 and we have kept them because they are perfect for organizations like us with high growth rates, scaling, and lots of financial information to manage but not in a position to hire a full-time person.

“The YPTC staff we’ve had have always been a part of our team,” he adds. “They don’t feel like they’re part-time. They’ve integrated themselves into our culture and even interface with our board. They bring a shared passion for our mission, in addition to managing our finances to the penny and achieving perfect audits. What more can you ask for?”

Hund is particularly enthusiastic about how YPTC goes above and beyond just the financial work. “Craig takes it upon himself to take the extra step of advising and guiding anything that impacts our organization. He has a vision that far supersedes just the financial information and that’s far beyond the scope of work you would normally expect. With YPTC it’s not just the numbers, it’s the overall mission. The numbers become a piece of the mission and YPTC is invested in it.”

30-YEAR CONGRATULATIONS: “Here’s to at least 30 more!”

“Making it for 30 years speaks to the longevity of an organization that has managed its business correctly, hired the right people and understands the nonprofit mission. Here’s to 30 years and to at least 30 more!”

— Michael Hund, CEO

EB Research Partnership

New York City, N.Y.