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Meeting the challenge

Jakub Tolar, M.D., Ph.D., is investigating safer treatments for kids who have EB. (Photo: Scott Streble)

Dads’ $450,000 matching gift supports novel research on devastating skin disease

As a pediatric oncologist, Jakub Tolar, M.D., Ph.D., sees tragedy every day. But little compares with the heartbreak he sees working with children who have epidermolysis bullosa (EB), a fatal disease that can cause the skin to slough off at even the slightest touch.

“This is one of the most awful diseases I’ve ever seen,” Tolar says.

While missing patches of skin are one of the most outwardly apparent signs of the disease, they’re only part of the complex difficulties these children and their families face.

With an esophagus full of lesions, it becomes painful to eat. And because of the body’s constant but flawed efforts to repair itself, fingers can fuse together.

Eventually, usually by age 20, these children will die of skin cancer.

But not if Tolar has his way. A member of the pioneering University of Minnesota team offering promising but risky blood and marrow transplants aimed at curing the disease, he is now focused on finding a safer alternative (see sidebar).

“It is high-intensity, potentially high-yield, very novel research,” Tolar says.

Alex Silver and his son, Jackson (Submitted photo)

That’s exactly what got Paul Joseph at the Epidermolysis Bullosa Medical Research Foundation and Alex Silver at the EB Research Partnership behind the project. Together the two foundations will contribute up to $450,000 to Tolar’s work — matching gifts from other donors dollar for dollar. The University’s Medical School and Department of Pediatrics each already have contributed generously to the match, but there is still $16,402 left to raise.

Joseph and Silver have personal motivation for making sure this research prospers. Joseph’s 8-year-old son, Brandon, and Silver’s 4-year-old son, Jackson, both were born with EB.

Everyday life with EB can be complicated. At times, even simple activities like walking and taking a bath can be agonizing because of constant open wounds.

“Some days are hard, but Jackson’s indomitable spirit is an inspiration to everyone around him,” Silver says.

Brandon Joseph, who is now in grade school, is adjusting to the fact that he’s different from other kids who get to play sports on the weekend, his dad says.

Paul Joseph with his son, Brandon, and wife, Andrea Pett-Joseph (Submitted photo)

“[Brandon] is a good reader, and he’s a bright kid. He’s very inquisitive,” says his dad. That means that he often has “big life questions” — why this is happening to him, why no one can make the EB go away — that are downright impossible for his parents to answer.

Joseph and Silver are hoping that, with a little help, they’ll give Tolar the resources to cure EB. With Tolar’s drive and the right financial support, Joseph and Silver are confident that this research will improve the lives of children who have EB and related skin diseases.

“The best gift we can give Jackson and any child with EB,” Silver says, “is a chance at having a good and pain-free life.”

By Nicole Endres

Thanks to the generosity of Children’s Cancer Research Fund, Frances and Leonard Spira, Pioneering Unique Cures for Kids, and many other donors, we are now more than 90 percent of our way to our goal. Help us meet the challenge by doubling your gift to breakthrough EB research today. Contribute to the match at www.mmf.umn.edu/giveto/eb1.

Contribute to the match at www.mmf.umn.edu/giveto/eb1 or by contacting Courtney Billing at 612-626-1931 or c.billing@mmf.umn.edu.

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