From 60 Minutes, AP, Chicago Sun-Times:

Senior presidential adviser David Axelrod and his wife Susan appeared on 60 Minutes yesterday to talk about their family’s 28-year struggle with epilepsy.

Daughter Lauren is one of three million Americans living with the disease.  — more than the number of Americans who have Parkinson’s, cerebral palsy and multiple sclerosis combined. About a third of them don’t respond to treatment.

“Epilepsy is like terrorism of the brain. You don’t know when it’s going to strike, where you’re going to be,” David Axelrod told correspondent Katie Couric.

Axelrod and his wife are part of a movement that is trying to jumpstart research to find a cure. They say the disease is not getting the attention it deserves.

See also:

Axelrod remains mindful of daughter with epilepsy — AP

Axelrod’s daughter: ‘Why does Obama need so much help?’ — Chicago Sun-Times

Previous posts here.

(Photo from 60 Minutes video)

In an op-ed posted on Yahoo! News, Health and Human Services (HHS) Secretary Kathleen Sebelius writes that the Obama administration has made autism research a national priority, adding $1 billion to the federal budget for autism research over the next 8 years. Her statement comes after the president announced $5 billion in federal funding for biomedical research.

Sebelius says autism has emerged as “an urgent public health challenge” with a growing prevalence rate that creates challenges for families, schools and health care providers. An excerpt:

… there has never been a comprehensive, well-funded effort across government to overcome autism – until now.

… Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism. We still have more questions than answers. But with additional funding and a new coordinated national strategy, we are working harder and more closely together to find those answers than ever before.

A ‘Call to Action’ — Newsweek cover story by Jon Meacham, the magazine’s editor

Epilepsy in America is as common as breast cancer and kills as many people. Up to 50,000 Americans die each year from seizures and related causes. More than 3 million Americans are affected by epilepsy. Their mortality is two to three times higher — and the risk of sudden death is 24 times greater — than that of the general population.

Yet funding for epilepsy research lags far behind other neurological conditions, at $35 per patient annually (compared with $129 for Alzheimer’s and $280 for multiple sclerosis.)

“It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern,” Meacham says … “All of us must focus on understanding epilepsy. And then we must defeat it.”

Related first-person essay by Susan Axelrod, wife of senior presidential adviser David Axelrod. Their 27-year-old daughter Lauren was diagnosed with epilepsy at 7 months. (Family photo above.) An excerpt:

(more…)

Jon Poling, a neurology professor whose daughter has autism, writes in the Atlanta Journal-Constitution that autism research should be refocused to explore environmental triggers.

An excerpt:

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes —- vaccines —- are all in the research agenda.

Poling’s daughter Hannah was a successful petitioner in the National Vaccine Injury Compensation Program. Earlier posts here and here.

See also:

Ga. Senate tables autism bill — WTVM 9 [Columbus, GA]/Associated Press

From The Hill:

Representative Gregg Harper (R-Miss.), whose son has Fragile X syndrome, welcomed advocates for people with the condition to Capitol Hill last week. Their goal: To raise awareness for the condition and pressure Congress for medical research funding.

The event was attended by 130 advocates from 35 states.

“We just want to make sure that when they are slicing up the pie that Fragile X is looked at, because it hasn’t gotten as much as it needs,” said Harper, who said he is the only member of Congress who has a child with Fragile X.

He described his son Livingston as “a blessing on everybody’s life.” Nineteen-year-old Livingston goes to community college and works in a restaurant.

See also: Gregg Harper launches PSA on Fragile X syndrome — The Meridian [MS] Star

Video of the public service announcement is here.

(Photo from greggharperforcongress.com)

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.

(more…)