From the BBC:

Lorenzo Odone, whose parents’ battle to save him from a rare nerve disorder was depicted in the 1992 film Lorenzo’s Oil, has died from pneumonia aged 30.

… Lorenzo was given less than two years to live when he was diagnosed at age 6, but his parents refused to accept the doctors’ prognosis. With no scientific training, they took on the medical establishment and set about finding a cure.

(more…)

From the Los Angeles Times:

Harlan Hahn, a longtime USC professor of political science and champion of disability rights who successfully sued the university to improve access for disabled people campuswide, died April 23 at his Santa Monica home. He was 68.

The cause was a heart attack, said his daughter, Emily.

Hahn was already in the vanguard of the disability rights movement when he joined the USC faculty to teach political science in 1972. He pushed for the U.S. Rehabilitation Act of 1973, which prohibited discrimination against the disabled, and the more sweeping Americans With Disabilities Act of 1990.

Hahn, who had polio as a child, brought a lawsuit against USC in 1998 to remove physical barriers that limited the mobility of disabled individuals. The suit was settled in 2001 when the university agreed to embark upon a major barrier removal effort.

He also wrote or co-wrote a dozen books, and filed a friend-of-the-court brief in the 1983 case of Elizabeth Bouvia, a woman who was paralyzed and petitioned the court to let her starve to death. Hahn argued that disabled people needed better support, not help in dying.

“Ultimately, a disability is not an organic deficiency,” Hahn wrote in the Los Angeles Times in 1983, “it is the product of a disabling environment. . . . To deprive any member of the disabled population of the mental and emotional strength that he or she can contribute to others would be an unforgivable act.”

See also the press release from USC: In Memoriam: Harlan Hahn, 68; The USC College political scientist was a major force in the disability rights movement

Many readers from across the country have been deeply touched by the sad news of Melissa Riggio’s death, and have been asking how they might express their condolences as well as their appreciation for the Riggio family’s contributions to the disability community. After Melissa was born, her father, Barnes & Noble CEO Steve Riggio, pioneered the creation of a “Children with Special Needs Collection” in 1991. This was long before other major booksellers had recognized that families were in great need of such information and support.

Some people have suggested presenting their local Barnes & Noble stores with flowers, cards and tributes to Melissa. I passed this idea along to Barnes & Noble, which said the family very much appreciates everyone’s warm wishes and concern at this difficult time, but asked that people instead send their expressions of condolence to Steve Riggio directly at his office:

Stephen Riggio, CEO
Barnes & Noble, Inc.
122 Fifth Avenue
New York, NY 10011

The family has also asked that any donations be made to The Valerie Center at Morristown Memorial Hospital, Morristown Memorial Health Foundation, P.O. Box 1956, Morristown, New Jersey 07962, or online at http://thevaleriefund.org/morristown.asp. When making a donation, please indicate that it is in memory of Melissa Riggio.

Melissa Riggio, whose life helped prompt the publishing industry to pay more attention to the expanding market of people with disabilities and their families, died Monday of leukemia, her family announced today. The daughter of Barnes & Noble CEO Steve Riggio, she was 20.

Ms. Riggio, who had Down syndrome, was the inspiration for Barnes & Noble’s creation of a special section of books about children with special needs. In an interview with the New York Times in 1991, Mr. Riggio said he realized after his daughter’s birth that books about children with disabilities were scarce and often difficult to locate.

That year, when Ms. Riggio was three, the company celebrated the nationwide debut of its “Children with Special Needs Collection.” It contained about four dozen titles about disabilities like autism, cerebral palsy, dyslexia and speech and hearing impairments, most of which were not widely circulated.

Mr. Riggio said at the time that he hoped the company’s efforts would lead to the publication of more books about childhood disabilities. (more…)

From the Charlottesville [Virginia] Daily Progress:

Former Charlottesville Mayor and longtime Del. Mitchell Van Yahres died Friday of complications from surgery for lung cancer.

Van Yahres, 81, served 24 years in the House of Delegates representing Charlottesville and Albemarle County through 2005 as a Democrat who chaired the Agriculture Committee but was best known as a progressive voice and a joyful political warrior.

… Thanks to his efforts, in 2001 Virginia became the first state to express its profound regret for the practice of involuntary sterilization of thousands of poor people and mental patients. California and other states have followed suit with official apologies.

The forced sterilizations of 8,000 Virginians were carried out over several generations into the 1960s at state hospitals through belief in eugenics, a discarded theory and false science that taught racial purity and was used in the 1920s to reclassify the state’s Native American population as black. Thirty states and Nazi Germany had adopted eugenics laws, some patterned after Virginia’s racial purity laws in effect from 1924 into the 1970s.

From Bloomberg News, Reuters:

Billionaire James LeVoy Sorenson, who overcame poverty and dyslexia to develop medical equipment such as the computerized heart monitor and disposable surgical mask, has died of cancer.

Sorenson was the richest man in Utah, the largest private landowner in the state as well as the richest Mormon, his spokesman said. He founded several companies, including Sorenson Research, which was acquired by Abbott Laboratories in 1980.

The chairman of Sorenson Development Inc had a net worth of $US 4.5 billion, according to a Forbes list published last year.

See earlier post on the high correlation between entrepreneurship and dyslexia.

Recanted earlier statement on DS being a ‘tragedy’

From Reuters:

Dr. Judah Folkman, a giant of cancer research whose work spawned more than 10 new cancer drugs, has died at the age of 74, according to Harvard Medical School.

One of Folkman’s interests was the understanding that people with Down’s syndrome are much less likely to have cancer than the general population. He suggested it might have something to do with the third copy of chromosome 21 — the hallmark and underlying cause of the condition. See earlier post here.

“Down syndrome is always considered a tragedy for families. But on the other hand, they bring this huge clinical clue,” ” Folkman told Reuters in an interview published January 2, when he was asked to comment on some recent research on the subject.

Folkman called back after the story was published, distraught that families of Down’s patients had been calling him and e-mailing him about the comment. “They thought I meant that I thought their children’s lives were a tragedy,” Folkman said.

“I have been talking to each family and explaining to them what I meant. We all know that people with Down syndrome can lead full lives now, and that these children are as much a blessing as any other child,” he said.