Wife of key Obama aide shares family’s journey with epilepsy

By Melissa Fay Greene in Parade magazine:

When 27-year-old Lauren Axelrod was diagnosed with epilepsy as an infant, her parents Susan and David were given scant information about the condition that was triggering dozens of brain-damaging seizures a day. They didn’t know the seizures would resist all efforts to control them, that available drugs caused devastating side effects, and that there was little ongoing research to help the 50 million people worldwide who share Lauren’s diagnosis.

In 1998, Susan Axelrod joined with other mothers to form the nonprofit organization Citizens United for Research in Epilepsy (CURE). Over the past decade, the group has raised $9 million for research and has changed the scientific dialogue about epilepsy.

David Axelrod was the chief strategist of the Obama campaign, and now serves as senior White House adviser.

“Complete freedom from seizures — without side effects — is what we want,” Susan says. “It’s too late for us, so we committed ourselves to the hope that we can protect future generations from having their lives defined and devastated by this disorder.”

Related stories from Parade about “heroic parents”:

• If the schools won’t help us, we have to help ourselves — Parents start a school for students with neurobiological and socialization disorders.
• Fighting a rare illness together — Parents start a foundation for research into Barth syndrome.
• Saving tiny hearts is what we have to do — Parents organize to fund research into congenital heart defects.

(Photo from Parade magazine)

On its first working day in office, the new administration has posted its agenda on disabilities here. The disability agenda is among 24 issue areas highlighted for action by the new administration, ranging from civil rights to defense to health care to women’s issues.

The agenda sets out goals that are substantially similar to those laid out in the Obama campaign’s platform on disabilities. Prominently displayed is a call for ratification of the UN Convention on the Rights of Persons with Disabilities. The agenda also lays out initiatives to improve education, employment, and community-based living for people with disabilities, and to end discrimination and promote equal opportunity.

The plan includes a separate section on autism, in which the president pledges support for increased funding for autism research, treatments, screenings, awareness, and support services. The agenda specifically underscores support for research into both the causes and possible treatments for autism spectrum disorders.

The full text of the document follows.

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Writing in The Lancet (subscription required), Kelly Morris says life expectancy for people with Down syndrome has improved dramatically over the past half century, yet research to improve health, cognition and learning among people with Down syndrome has not kept pace. Many in the field say such research has been neglected and underfunded.

Morris says NIH funding for Down syndrome research stands at $17 million this year, down 26 percent from $23 million in 2003. Experts say the NIH is focusing its immediate attention on mouse models, rather than on studying ways to improve the lives and cognitive function of people who have the disorder. “Many would argue that these priorities are the wrong way round,” says Frank Buckley of Down Syndrome Education International.

Writes Morris:

… A shift in focus towards studying variables in people with Down syndrome, especially those that affect learning and cognition, would be most welcome. Such research could also point to differences in the biology of Down syndrome that can promote further useful, straightforward interventions, which is important since specific drug treatment can require years of further investigation.

The article appears in Vol. 372, September 6, 2008.

AP/Washington Post:

The National Institute of Mental Health (NIMH) has announced the cancellation of a study of chelation, a controversial treatment for autism. Funds for the study would be better used testing other potential therapies for autism and related disorders, the NIMH statement said.

Critics had called the experiment unethical because it subjected children to the risk of harm. The study had previously been suspended after a drug used in chelation had been linked to lasting brain problems in rats.

Chelation is a process that removes heavy metals from the body and is used as a treatment for lead poisoning. Many parents of children with autism have sought it out as a therapy based on the unproven theory that mercury in vaccines triggers autism.

See earlier posts:

• ‘Fringe treatment could get federal study’ — AP
• Doctors alarmed by availability of OTC chelation agents — Los Angeles Times
• Charges dropped in chelation death of boy with autism – AP

We’ll find out if the senators who were crying in the moment will be ready to get serious about cancer

Jonathan Alter in Newsweek:

It’s too bad that Hamilton Jordan isn’t still alive to remind the media that Ted Kennedy isn’t already dead. Jordan, who died last week after surviving four different cancers for 22 years, would have loathed those funereal and, in the case of the New York Post (TED IS DYING), offensive headlines about Kennedy. So does Kennedy, no doubt …

We’ll soon find out if the senators who were choked up last week at the prospect of losing their beloved colleague will be ready to get serious about cancer. Think we’re already spending enough? Jordan sent me an e-mail toting up how we spend more in six months in Iraq ($54 billion) than we’ve spent in 30 years on the National Cancer Institute, which funds most cancer research. Today, only two in 10 grant proposals from qualified researchers are funded by the NCI, which means that plenty of possible cures die for lack of funding.

Newsweek site carries video of Sen. Robert C. Byrd (D-West Virginia) apparently weeping as he delivers a statement about Sen. Kennedy.

See earlier post.

See also: Networks join forces to fight cancer.

By Patricia E. Bauer

He was 32 at the time, the essence of cool and one of the most powerful men in America. I was 25, toiling in relative obscurity in the depths of the White House press office.

He dropped by my office occasionally to read editorials clipped from out-of-town newspapers. I tiptoed by, awestruck, as he thumbed through my files of tattered clippings, certain that the information he sought was destined for the President’s ear alone.

My earliest impressions of Hamilton Jordan, the former White House chief of staff, were shaped by those clippings. Young and brash, the press had said of him at the start. Cocky. Brilliant. A political boy wonder, he had devised the strategy that brought Jimmy Carter to Washington.

With that 80-page memo, Hamilton had changed my life and the lives of countless others, leading us to Washington under a banner of change. Years later, I told him that he got the credit for my marriage, since I never would have met my husband had I not been among the lucky ones swept into the White House in the spring of 1977.

Hamilton waggled his eyebrows and quipped that he hoped it was credit –- not blame. He then got down to what really interested him, asking many questions about our daughter’s battle with leukemia and offering encouragement with an earnest squeeze of my hand.

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From the Associated Press, USA Today, ABC News and elsewhere:

Retired Supreme Court Justice Sandra Day O’Connor took her family’s private battle with Alzheimer’s disease public Wednesday as she urged Congress to speed research and aid to fight the coming epidemic of the mind-destroying illness.

“Our nation certainly is ready to get deadly serious about this deadly disease,” she told the Senate Special Committee on Aging.

She has a personal stake. “My beloved husband John suffers Alzheimer’s,” she said. “He is not in very good shape at present.”

… More than 5 million Americans are living with Alzheimer’s disease. The number is poised to skyrocket, with 16 million people forecast to have it by 2050 thanks to a graying population. It already afflicts one in eight people 65 and older, and nearly one in two people over 85.

… Already, 10 million people are estimated to be sharing the overwhelming task of caring for a relative or friend with dementia, juggling jobs and other family responsibilities with little formal training, support or financial help available. The Alzheimer’s Association says the unpaid care they provide is valued at $89 billion.

O’Connor stepped down from the high court in 2005, saying she needed to care for her husband

Interview with O’Connor is here.

See earlier posts here and here.