From the New York Times:

When Chris Pendergast was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s disease) in 1993, he wasn’t expected to live long. Now, almost fifteen years later, he’s using his long-term survivorship to draw attention to the need for more ALS research and immediate access to Medicare and Social Security benefits. His foundation, Ride for Life, has raised $3 million for research and patient services.

… Mr. Pendergast has no illusions about the Darwinian worlds he’s competing in – one for personal survival, the other for attention in the bazaar of marches and runs and walks for one cure or another. Most of the efforts, he said, are organized and supported by the people who have survived a disease. But 90 percent of people with A.L.S. are gone in five years. Almost no one lives as long as he has. So, he figures, if there’s a divine logic to his ability to survive, maybe this is it.

He’d like to see the disability community coordinate its efforts. “I don’t think different disease communities should be scrapping for pieces of the pie, ” he says. “I would like to have a bigger pie.”

From the [UK] Guardian:

Bestselling British science fiction writer Terry Pratchett, who was diagnosed with Alzheimer’s disease three months ago, condemned the “shameful” lack of funding for the disease.

Speaking at a conference of the Alzheimer’s Research Trust in Bristol, Pratchett said he wanted to “kick a politician in the teeth.”

The disease affects 700,000 people in the UK, but only £11 is spent per patient every year on research, compared to £289 for each cancer patient.

“There’s nearly as many of us as there are cancer sufferers, and it looks as if the number of people with the disease will double within a generation,” Pratchett said.

“It’s a shock and a shame, then, to find out that money for research is 3% of that which goes to find cancer cures”

… The author, who has sold more than 55 million books worldwide and recently published the 36th book in his Discworld series of humorous fantasy novels, is donating £494,000 ($1m) to the Alzheimer’s Research Trust.

Earlier post here.

Scant funding threatens the implementation of a broad agenda

From American Medical News (the newspaper of the American Medical Association):

The National Institutes of Health has released an ambitious research agenda on Down syndrome, with ten-year objectives that cover disease progression, diagnosis and screening, as well as treatment and management. The agenda is not accompanied by funding.

“Down syndrome is the most common chromosomal condition that mankind has, yet surprisingly, the NIH, the [Centers for Disease Control and Prevention] and the national Down syndrome movement have never had a focused research agenda,” said [Brian Skotko, MD, a pediatrician at Children's Hospital in Boston and a long-time advocate for people with the syndrome, including his sister]. This circumstance has occurred despite the fact that other disability and medical conditions that occur in far fewer people have such agendas, he added.

But the funds needed to carry out these agendas are missing, all concurred. NIH funding for Down syndrome research has decreased from $23 million in fiscal 2003 to $17 million in 2008, Dr. Skotko noted. In comparison, autism research, which should remain intact, he stressed, is funded at $128 million for this year.

In addition to the lack of funds, the lack of a national registry of people with Down syndrome also is obstructing progress, Dr. Skotko said.

The research agenda effort was led by the National Institute of Child Health and Human Development, which sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. The report is available here.

From MSNBC.msn.com, Des Moines Register, Associated Press story in the Washington Post:

Hillary Clinton used the first stop on a two-day, post-Thanksgiving swing through Iowa on Saturday to lay out a $700 million a year plan to help people affected by autism. The money would be spent for research and provide support for families and teachers dealing with the disorder, as well as for autistic children and adults.

“It’s time we had a government and a president that recognized the seriousness of autism and addressed it head-on,” Clinton told a crowd of more than 300 people in Sioux City, a town evenly divided among Democratic, Republican and independent voters. “We can help people with autism live rich and full lives.”

Current federal spending is $100 million.

… Clinton said she wants to invest more in tracking the possible causes of autism.

“I believe there are environmental triggers,” she said.

Editor’s note: Here’s my op-ed from the Washington Post, November 16, 2007. It was among the top ten most e-mailed pieces off the Post website for almost 48 hours after it appeared, and was the most e-mailed item for a portion of that time.

See some individual comments here and here.

See comments to the Washington Post website here.

Email responses written directly to me are here and here.

See my related speech to obstetricians and gynecologists here.

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If the test says Down syndrome:

We need a prenatal screening process without a bias toward abortion

By Patricia E. Bauer

All across the land this fall, people have been gathering to promote awareness and acceptance of Down syndrome. Central to their message is the idea that people with the condition are valued family members who lead happy, fulfilling lives.

At the National Institutes of Health and the Centers for Disease Control and Prevention, scientists have been meeting to develop research agendas to improve the lives of people with Down syndrome, the genetic condition that results when a person has three copies of the 21st chromosome instead of the usual pair.

But in the places where medicine is practiced, a very different and less benevolent awareness of Down syndrome reigns. As a result of recent changes in technology and standards of care, women are undergoing prenatal diagnostics for Down syndrome in unprecedented numbers — often multiple times during their pregnancies. When the condition is detected, they are having abortions at rates that are thought to approach 90 percent.

Those of us who actually have relationships with people with Down syndrome, and who see them achieving and thriving in their communities, view this paradox as baffling at best, tragic at worst.

We cherish our friends and family members and think their unexpected extra chromosome is not the most important thing about them. And we worry that the relentlessness of genetic testing is amplifying stigma and bias against the 350,000 flesh-and-blood Americans who have the condition, as well as people who have other conditions that are now or soon will be prenatally discoverable. (more…)

From the Associated Press in the Washington Post:

Actress and talk show host Leeza Gibbons, whose mother has Alzheimer’s disease, has been named to the board that oversees California’s stem cell research agency.

The former “Entertainment Tonight” host will fill the Alzheimer’s advocate seat on the 29-member panel that oversees the California Institute for Regenerative Medicine, which doles out $300 million annually in research grants. She was appointed by Gov. Arnold Schwarzenegger.

Gibbons, 50, spent a decade as a host of “Entertainment Tonight” and had a daytime talk show called “Leeza” from 1994 to 2000. Last year, she had a short-lived run on ABC’s “Dancing With the Stars.”

While autism attracts research money, other diseases struggle for funding

From ABC News, a feature on the successful fund-raising efforts of the autism community and concerns by other advocates that their causes are being lost in the dust. “I won’t say it takes away from other disorders, but [they] somehow influence Congress and have a better opportunity to see that their interests are funded,” said Marshalyn Yeargin-Allsopp, pediatrician and epidemiologist for the CDC.