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| From: Johns Hopkins Magazine, February 2008. Pages 60-61. Alumni - People and Events Howard Lenhoff, A&S '55 (PhD): Behind the Music Howard Lenhoff recalls the sleepless nights watching over his daughter, Gloria. He and his wife, Sylvia, knew early on that something was wrong with their first child. The tiny baby, born in 1955, had multiple physical troubles, including poor eyesight, fused bones, a mild heart condition, and digestive problems. With each passing month, as Gloria missed developmental milestones, her parents searched for answers.
They later discovered that Gloria had Williams syndrome (WS), a rare genetic disorder that manifests itself with pixie-like facial features and severe cognitive impairment. With an IQ of 55, Gloria cannot perform the simplest of math equations, tell her left from right, write legibly, or even cross the street safely by herself. Lenhoff has turned himself into a nationally recognized expert on WS and has published two books on the subject. Williams-Beuren Syndrome: Research, Evaluation, and Treatment (Johns Hopkins University Press, 2006) is a compendium of research reviews that he edited with pediatricians Colleen A. Morris and Paul P. Wang. The Strangest Song: One Father's Quest to Help His Daughter Find Her Voice (Prometheus Books, 2006), which the Lenhoffs co-authored with journalist Teri Sforza, recounts their crusade to communicate to others that Gloria, and many like her, had a talent to be nurtured. As Gloria grew, Lenhoff a scientist, activist, and eternal optimist looked for positives in his daughter's life. For example, like most kids born with WS, Gloria had an extremely genial disposition. She had advanced social skills. And, as it turned out, she was enormously talented musically. Her father says that when she was a toddler, he would strum a few simple chords on his guitar and little Gloria would crawl, eyes wide open, into his lap. "There was always something unusual with her and music," Lenhoff says. "But she was our first child; we thought all kids had this connection to music." When she was 11, the family went to an alumnae event for Goucher College, Sylvia's alma mater, where Sylvia met a fellow alumna and opera singer, Ann Wilson, who had taught music to jail inmates. "Sylvia asked her if she would work with Gloria, help teach our daughter," Lenhoff says. "Sylvia told her Gloria could not read music and she said, 'so what?' For her first lesson, the teacher sang songs by Handel and Mozart, and with little pause Gloria accurately sang them right back to her. Howard knew immediately just how special his daughter was. Convinced that people with WS have an unusual capacity for learning music, Lenhoff a former investigator of the Howard Hughes Medical Institute and a Distinguished Fellow of the Iowa Academy of Science made it his mission to crusade on behalf of his daughter and others like her. After receiving his degree from Johns Hopkins, Lenhoff spent his professional career as a biochemical researcher, and upon retirement, turned his scientist's eye on WS, receiving a National Science Foundation grant to study absolute pitch and other aspects of musical cognition in people with the condition.
In 1999, Lenhoff helped found the Berkshire Hills Music Academy, the only private post-secondary residential school in the world for young adults with learning, cognitive, or developmental disabilities and a special talent for music. The academy, located in South Hadley, Massachusetts, educates, trains, and develops the talent of those like Gloria so they can achieve personal growth and make a positive contribution to society. "I always knew that people who are handicapped might excel in areas that 'normal' people can't," he says. "I focus on what people can do, to encourage them. With my work with Williams syndrome, I was trying to encourage scientists to look at musical abilities." Lenhoff a self-described "Ann Landers of the WS set" also runs www.williamssyndrome.org, a comprehensive Web site where he fields inquiries weekly from parents who have just learned that their child has WS. Championing causes on behalf of others is not new to Lenhoff, a "lifetime activist devoted to helping those who are unable to cope with large organizations," he says. He honed his activist skills early on, fighting for the cause of Ethiopian Jews, an experience that resulted in his most recent book, Black Jews, Jews, and Other Heroes: How Grassroots Activism Led to the Rescue of the Ethiopian Jews (Gefen Publishing House, 2007). Certainly, Gloria's success is due in large part to her parents' support and determination. Now 53, she is a gifted lyric soprano. She has perfect pitch, sings in more than 30 languages, and her ever-growing repertoire of more than 2,000 pieces ranges from Elvis to Puccini. And she is much in demand, having performed with major opera companies worldwide and recorded several classical CDs. She is a Kennedy Center Millennium Stage artist, was featured on PBS and "60 Minutes," and once provided on-stage accordion accompaniment for members of the legendary rock band Aerosmith. "I just felt we needed to do as much as we can for her, and she had a real zeal for music," Lenhoff says. "We realized that she, like normal musicians, could also make a living from her craft. Greg Reinzi
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Please send mail to williamssyndrome@insightbb.com with questions or comments about this web site.For additional information about Williams syndrome, please send an e-mail to hlenhoff@uci.edu.For contact with other Williams syndrome families --In the USA: please send e-mail to info@williams-syndrome.orgOutside the USA:
please visit our
International Williams Syndrome Support Groups page for
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Howard
and Sylvia Lenhoff gave daughter Gloria an accordion for
her bat mitzvah an instrument she later played with the
band Aerosmith.
