Leaving a legacy
A $1 million pledge from the Henschel family is a gift for the psoriasis community
From September/October 2006 Psoriasis Advance
Victor Henschel was a generous man, always ready to lend a hand, or offer a kind word or smile to those he encountered—even during the 35 years that he struggled with psoriasis and psoriatic arthritis. His way of life was deeply rooted in his favorite quote, "Love will find a way."
So it's not surprising that when Victor passed away in 1983, his love and compassion were
carried down through the generations of his family.
When Victor died, his son Neal wanted to do something in memory of his father. In August,
his wish became a reality when the Henschel family pledged $1 million to Finding a Cure: The Campaign for the National Psoriasis Foundation, in honor of Victor and his children, grandchildren and great-grandchildren.
The gift was pledged through the Barbara and Neal Henschel Charitable Foundation, on
behalf of Barbara and Neal, and their three sons and their wives: Benjamin and Hanna,
Andrew and Nancy, and Jeffrey and Lisa Henschel. It is dedicated solely to the creation of the National Psoriasis Victor Henschel BioBank, which will hold the world's largest collection of psoriasis and psoriatic arthritis genetic samples for use in research.
"I always wanted to do something to honor my father," says Neal Henschel. "The idea [with the gift] was to see if we could get some kind of really wonderful result so that I would know that psoriasis and psoriatic arthritis wouldn't get passed down to future generations of our family. And we wanted to help the rest of the world that suffers with the disease."
Victor Henschel (photo courtesy of the Henschel family)
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Psoriasis has played a role in several generations of the Florida-based Henschel family, illustrating the role genetics plays in psoriasis. Victor had psoriasis, and then it appeared to skip a generation as neither Neal nor his younger sister, Judy Gelman, have psoriasis. But two of Neal's three sons, Andy and Ben, along with Judy's daughter, Jane Kaufman, have the disease.
Victor was in his 40s when he developed psoriasis and psoriatic arthritis. The psoriasis started on his head, and progressively got worse until it covered his body. "It was extremely debilitating to him," says Neal. "He suffered mightily from it, but never complained about the disease." Judy spent countless hours caring for her father and knew firsthand how badly his body was being ravaged by the disease. "Amazingly, whenever asked, my father always responded that he was 'feeling super!' no matter how poorly he was feeling," says Judy.
Victor went to many dermatologists, but mostly found himself the subject of experimental treatments that didn't work—or worse, made him sick to the point of being hospitalized.
What did seem to work was visiting the Dead Sea in Israel, where the high salt and mineral content of the water, along with sunlight, can have a therapeutic effect on psoriasis. Victor was one of the early pioneers of the Dead Sea, making several visits in the days when there were no hotels and few patients or doctors who spoke English.
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Bottom row from left to right: Victoria, Alexandra and Jamie Henschel; top row: Andy, Lauren and Nancy Henschel
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"I remember his letters—he was very lonesome there and missed all of us, but he knew he was doing the best thing for himself," says Andy Henschel, of his grandfather.
Andy's psoriasis and psoriatic arthritis developed in his teen years, and he has painful
memories of watching his grandfather struggle with his disease.
"One of the things that shaped the way I dealt with my psoriasis as a young man was thinking how alone I might end up, just like my grandfather—being alone at the Dead Sea, being alone in my own bed. It took me a very long time to get past what my grandfather's experience had been."
As a 15-year-old, Andy was embarrassed to share the extent of his psoriasis with his parents, and he felt he had nowhere to get information. "I had a World Book Encyclopedia from 1972; there was no Internet and nobody to talk to." Andy felt that
without information, a person can't have hope and without hope, there is nothing.
That pain, isolation and lack of information eventually prompted Andy to join the National Psoriasis Foundation in 1994 and to later serve on the Psoriasis Foundation Board of Trustees from 1997-2006.
His main reason for joining the board was to help create resources that he didn't have as a child. Andy's dedication to the Psoriasis Foundation youth program resulted in age-specific youth booklets and a guide for parents. Additionally, the Foundation's online message board was expanded to include a forum where youth could connect and discuss issues that they face due to their disease.
Neal and Barbara Henschel
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"I knew that if my grandfather had known there was a Psoriasis Foundation, he would have done every single thing in his power to protect me and all of his grandchildren from psoriasis," says Andy, who with his wife Nancy, has four daughters. The Henschels hope the $1 million pledge toward the BioBank will further genetics research that will
eventually lead to a cure. Neal adds, "We're doing this at this time to help not just our family, but everybody."
In addition to the $1 million pledge to Finding a Cure, the Henschels plan to gather their friends, family and business associates to raise additional dollars. They have already received significant commitments from several business partners. Neal and Barbara and their family are happy to continue Victor's legacy of compassion and generosity.
"Our gift is based on love of family and hope for the future," Neal says. "Wouldn't it be great if it led the way to a cure?"
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