Susan Axelrod: ‘I must save my child’
February 15th, 2009
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)
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October 26th, 2009 at 5:02 pm
I saw David and Susan Axelrod with their daughter Lauren on 60 Minutes last night, and was so interested in their words as I do not recall ever having seen anything devoted to epilepsy before. I was diagnosed with the disorder 52 years ago, and am presently controlled with my medications. In addition, I am curious, Susan, as to whether you or a part of your family might live across the road from us in Woodland Shores, Bridgman, MI. We have neighbors of that name. If you are one and the same person, I would look forward to meeting you and discussing how epilepsy has influenced our families’ lives.
Thank you. Maggie Mendus
February 23rd, 2009 at 10:46 am
This article was very inspiring. We have a 32-year-old daughter,Vidya Menon, who was born “normal”, developed seizures at 30 months, and from then onwards, it has been a long drawn struggle with her intractable epilepsy.
Hats off to mothers like Susan Axelrod. I was greatly moved by her valiant struggle with her Lauren”s epilepsy.
Krishna Menon
Hyderabad
India
February 15th, 2009 at 8:48 pm
I read the article “I must save my child” by Melissa Fay Greene in Parade Magazine with great interest. It brought back many sad memories for me as I, too, had a child born in 1978 who developed uncontrollable seizures at 8 months of age. He, unfortunately, died at age 4 from a seizure. I also found it very coincidental that my maiden name is Landau and that I am originally from the Chicago area. I wonder if I am related to Susan Axelrod and that we share some genetic makeup that may have led to our children’s seizure disorders?
Is there any way I could email Susan Axelrod to find out if there is a connection between us?