I had the pleasure of meeting Dr. Healy when I started spending time in Washington, DC a few years ago. Our mutual friend Tammy Haddad introduced us, knowing we would have much in common and much to share. We first met over cocktails, and then she graciously attended a CURE luncheon we hosted in DC. We exchanged a few emails, and then I lost touch. I had no idea she was struggling with a recurrence of brain cancer.
I was in awe, and a bit nervous, when we got together that first time. Here I was sharing drinks with a former Director of the NIH (not to mention the first female Director!). People like me were a dime a dozen–she’d likely met with way too many of us, and heard our sad stories. I was just another patient advocate looking for tips on how to advance my disease.
But, she immediately put me at ease, and made me feel as if epilepsy research was at the top of her agenda as well. It felt like we were long-time fellow crusaders, and she was full of wise suggestions and ample support and encouragement.
I dream of the day when we will have cured epilepsy, and that I can sit back and write down my reflections on all the amazing people I have met along this journey. So many individuals from so many different walks of life. They have all motivated me, each in unique and special ways, sometimes with just a single nugget that resonated with me, motivating and fueling–or re-fueling–my energy to keep up this fight.
Here’s the nugget Bernadine left me with–words that I have thought of so often since she uttered them,and now will certainly never forget:
“There is no history of scientific progress in a disease state that has not been started and fueled by patient advocates. Keep up this good work.”
I hope her words inspire you, as they did me, to strengthen your commitment to advancing epilepsy research. It began with us, and it will continue to grow–but not without us.
The 2011 WHC Garden Brunch featured two great organizations, CURE Epilepsy and the White Ribbon Alliance for Safe Motherhood. Our honorary co-chairs Susan Axelrod and Wendi Murdoch led the push for advocacy and results.
Thanks to your generous donations, CURE Epilepsy is having a record-breaking year in raising funds to find a cure. Your dollars are making a difference. Recently, a CURE-Funded Project had a major breakthrough. UC Irvine and French researchers identified a central switch responsible for the transformation of healthy brain cells into epileptic ones, opening the way to both treat and prevent temporal lobe epilepsy. Epilepsy affects 1 to 2 percent of the world’s population, and TLE is the most common form of the disorder in adults. Among adult neurologic conditions, only migraine headaches are more prevalent. TLE is resistant to treatment in 30 percent of cases.
“We’re quite excited about this discovery,” UCI neurologist and neuroscientist Dr. Tallie Z. Baram said. “Understanding how previous brain infections, seizures or injuries can interact with the cellular machinery to cause epilepsy is a crucial step toward designing drugs to prevent the process. We don’t want to just treat people with epilepsy. We hope to develop medicines that will prevent epilepsy from occurring – and influence the lives of millions of people around the globe.”
The White Ribbon Alliance for Safe Motherhood is using the month of July to encourage leaders to recognize the importance of health workers. There is a shortage of more than 3.5 million health workers across the globe and millions of existing health workers lack the support, equipment, and training they need to provide quality care. These nurses, doctors, midwives and community health workers are vital for progress on global health and development and for ensuring the millennium development goals are met.
In September, decision-makers will convene at the United Nations General Assembly to review progress on the Millennium Development Goals. It will be an opportunity for governments to announce substantial and specific commitments to support and invest in health workers. By sharing your voice on these issues, together change can be made.
Here is our photo gallery including David and Susan Axelrod, Rupert and Wendi Murdoch, Sarah and Todd Palin, Matthew Morrison, Jeremy Piven, Bill and Bernie Daley, Tina Tchen, Eric Podwall, Chelsea Handler, T. Boone Pickens and many other notables.
We are proud to support the work of CURE Epilepsy and the White Ribbon Alliance, and encourage you to do the same by clicking on the links below.
David & Susan Axelrod with daughter Lauren and NPR's Peter Sagal
Vice President Joseph Biden shared his deeply personal story of brain trauma at the annual Citizens United for Research in Epilepsy (CURE) fundraising gala on Tuesday. He told the Chicago crowd gathered at Navy Pier’s Grand Ballroom about the life-threatening aneurysm and two subsequent seizures he suffered in 1988. Biden called epilepsy “a terrible lightning storm in the brain.”
“It’s amazing what we don’t know about how the brain functions,” Biden said. “For the first time in human history, significant resources and human capital are being applied to unlock how to catch that lightning.” REUTERS has more on the story.
CURE was founded in 1998 by Susan Axelrod, wife of former White House senior Adviser David Axelrod, and other parents frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. The Axelrod’s daughter, Lauren, lives with the disease.
“There is no lonelier feeling — and many of you have experienced it — when you know your child has a chronic illness which can’t be controlled,” David Axelrod explained.
Epilepsy affects over 3 million Americans of all ages and some 50 million people worldwide. It can develop at any age and may be a result of head injury, brain tumor, stroke and many other unknown causes.
“I can only image what it’s like to stare at your child while their eyes roll back in their head,” Biden said, quoted in The Chicago Tribune. “But the truth is, I believe with every fiber of my being that (a cure) is just around the corner.”
Chicago Mayor Rahm Emanuel and Illinois Governor Pat Quinn were among the 900 people attending the gala that raised almost $800,000 for the nonprofit organization. In addition to the Vice President’s keynote speech, the event featured Peter Sagal, Host of NPR’s “Wait Wait… Don’t Tell Me.” Since its founding, CURE has raised $15 million to fund epilepsy research and has has awarded over 107 cutting-edge projects.
More information about CURE can be found at cureepilepsy.org. WHCI is proud to support the work of CURE and if you would like to donate, please click HERE. The video below premiered at the annual CURE gala and features poignant, personal stories of families who have battled epilepsy.
Hundreds gathered at the Newseum Wednesday evening to recognize the scientific work of CURE Epilepsy, raise awareness, and to honor 2010 Friend of CURE Awardee, longtime television producer and WHCInsider’s own Tammy Haddad.
Susan Axelrod, Chair and founding member of Citizens United for Research in Epilepsy, was on hand to mark the special occasion. Axelrod and Connie Milstein, CURE supporter and noted philanthropist, co-hosted the event.
Connie Milstein, a CURE board member, announced the Axelrod Milstein Challenge Grant. It is a $500,000 two-year program. CURE Challenge Grants are CURE’s most prestigious, and fuel the much needed research to find the key to the cure of this dreaded disease.
“Susan works tirelessly to find a cure for epilepsy and seizure disorders. Like many families across the world, the Axelrods live with this disease every day, but their work, their strength, and their optimism give hope to so many, as they fight and live for a cure,” said Milstein.
Susan Axelrod described the lack of progress and the difficult research road ahead: “With so many troops returning from war with traumatic brain injuries and epilepsy, the need is more urgent now.”
Axelrod, along with her husband David, was desperate to find answers when their own daughter Lauren was diagnosed with uncontrollable epilepsy at 7 months old. Twelve years ago, CURE was founded by Axelrod and two other mothers around a kitchen table. Many members of the CURE family were on hand last night and gathered on stage for a group photo and greeted with a round of applause.
The room was a living tribute to CURE and Ms. Haddad, as devoted friends from both sides of the aisle raised a glass to what many have called a “force.” Haddad used her annual White House Correspondents Weekend Brunch to raise awareness for CURE after seeing Susan and Lauren Axelrod on the cover of PARADE magazine, and later on NBC’s The Today Show.
“I chased her down for weeks to get her to host the Correspondents Brunch because I wanted to help. Here was a chance to use a HUGE platform for an important message,” said Haddad. “What did she tell us? No parent, no child, no family — no person should have to suffer and experience the pain of epilepsy. That is her goal…and since she is unstoppable we know she will reach that goal.”
Cabinet appearances by HHS Secretary Kathleen Sebelius and Labor Secretary Hilda Solis, Dr. Howard Koh, NIH’s Story Landis and Dr. Tony Fauci.
The audience roared as a video roast of Haddad began with David Gregory anchoring a “Meet The Press” open lamenting the lack of agreement on anything in Washington except in friendship and respect for Haddad. Also in the video: ABC’s Jake Tapper from the White House, Greta Van Susteren and John Coale. Jon Meacham roasted the longtime network and cable news producer by reminding the audience that Christopher Buckley put her in his novel “Thank You for Smoking.” Haddad’s former MSNBC’s colleagues, the “Morning Joe” team – Joe Scarborough, Mika Brzezinski, Willie Geist, Mark Halperin and Harold Ford taking turns trying to figure out what award Haddad hadn’t won yet while praising her work for CURE.
The surprise ending was a song written and performed for Haddad by Glee superstars Matthew Morrison and Jane Lynch.
Among those there to help celebrate: Rima al Sabah, the Kuwaiti Ambassador’s wife; British Ambassador to the US Nigel and Julia Sheinwald; AFT President Randi Weingarten; Tom Oliphant, Mary Louise Oates and Robert Shrum.
Politicos aplenty including Bloomberg’s Kevin Sheekey, Joel and Lisa Benenson, Jim Margolis, Susan Sher, Stephanie Cutter, Julianna Smoot, Dan Pfieffer, Eric Lesser and Jen Psaki.
Arizona Attorney General Terry Goddard fresh from a Supreme Court appearance, along with crowd favorite Terry McAuliffe; Tony and Heather Podesta; Podesta Group CEO Kimberly Fritts and hubby, Marion Turner; Holly Page; Bruce Reed and Bonnie LePard.
Media biggies included Wolf Blitzer, Howard Fineman and Amy Nathan, Lynn Sweet, Betsy Fischer (producer of the surprise video), Andrea Mitchell, Gloria Borger, Roger Simon, Annie Groer and Hilary Rosen.
Both republican and democratic political operatives included Bob Stevenson, Jane Oates, Dan Meyers, Erica Elliot, Rich Galen and Tom Synhorst.
Designed by Jacquie Bloom, the Newseum’s Knight Center was aglow in CURE red. Guests enjoyed the pomegranate martini ice luge and the ice cream sundae bar.
CURE is in the middle of their Every Dollar Counts Every seizure Matters campaign. To donate CLICK on CUREEpilepsy.org.
While New York wraps up its Fashion Week, DC had it’s own celebration of fashion mixed with a great cause spearheaded by Susan Axelrod, founder of CURE Epilepsy. Mika Brzezinski, of Morning Joe fame brought her great fashion sense and even bigger heart to the J.McLaughlin Clothing store to benefit CURE Epilepsy at the Georgetown shop.
Mika Brzezinski and Susan Axelrod
Amongst a colorful display of handbags, sweaters, and dresses, glittering media (the sparkly Mike Allen and Morning Joe’s Louis Burgdorf) and government officials (FLOTUS Chief of Staff Susan Sher) picking up some of the latest trends for fall. A percentage of the proceeds go straight to fund research to find a cure for epilepsy.
Fashion plate Postie Jonathan Capehart bought a nice selection of shirts, and Politico’s Mike Allen got a shirt and tie combo while Quorvis’ Kelly McCormick picked up the perfect little black dress.
CURE board member Gardiner Lapham and her mother were in attendance and J. McLaughlin CEO Steven Siegler charmed the crowd offering wine and cheese and great cheer. Debbie Dingell, Jayni Chase and Marc Adelman, Patrick and Anne Gavin, and other Georgetown socialites chatted with Axelrod as she posed with supporters and friends.
What is more fitting in Georgetown than a parting gift of a Georgetown Cupcake in a blue J. McLaughlin box!
2010 WHC Garden Brunch: Story Landis, Susan Axelrod, David Axelrod
While at the 2010 White House Correspondents’ Garden Brunch, guests were asked to share the best advice from their mother in honor of Mothers Day Every Day and CURE Epilepsy.
Some of the answers from the media, business, and political elite who stepped across the lawn at the 18th annual brunch are posted below – and be sure to WATCH the video of the tribute to two important causes which affects the lives and health of families all across the globe: maternal mortality and epilepsy.
Susan Axelrod, Founder & Chair of CURE Epilepsy spoke from the heart about the disease and the desperate need to support research and find a cure. Axelrod, the honorary co-chair of the brunch, was joined on stage by “Glee” star Matthew Morrison, People’s cover boy Chace Crawford, and HBO’s “The Pacific” star Joe Mazzello, as well as the Jonas Brothers and Demi Lovato, who showed their support for CURE Epilepsy and MDED by signing a giant Mother’s Day card.
CHERYL HINES: My mom taught me to have fun in life. That’s what it’s about!
RUPERT MURDOCH: My mother told me to look after my sisters!
DANA DELANEY: Tell the truth – it’s easier to remember
STEVE WEBER: Swallow your spit
SUSAN SHER, First Lady’s Chief of Staff: 1. Always wear lipstick 2.
It’s just as easy to fall in love with a rich man as a poor man. (I followed neither.)
WOLF BLITZER: Do the best you can!
ARIANNA HUFFINGTON: Be fearless!
NICK JONAS: Treat women with respect!
JOE JONAS: Coins are not edible!
DEMI LOVATO: Pack clean underwear!
JOE MAZZELLO, HBO’s “The Pacific”: Make it real
DAVID GREGORY: Always wear socks!
KIM KARDASHIAN: My favorite thing my mother taught me is…. To be myself
CHEVY CHASE: Make sure you shake few hands. You can get hurt.
JAYNI CHASE: Wear comfortable shoes.
PATRICIA ARQUETTE: Get quiet and ask God to let you feel who you are …your true self.
BRET BAIER: Always open a door and pull out a chair for a lady!
ANDREA MITCHELL: Watch out when you cross the street
Secretary of Homeland Security Janet Napolitano and CURE Epilepsy's Susan Axelrod at the 2009 White House Correspondents' Garden Brunch
It’s been called the Nerd Prom and compared to Hollywood’s Oscar extravaganza, but the White House Correspondents’ Association Dinner and the parties surrounding it have evolved into their own electrifying entity. Politico takes a behind the scenes look at where the sparks will be flying this weekend.
2009 White House Correspondents Garden Brunch headliners Susan Axelrod (CURE Epilepsy) and Ann Curry (NBC News) led guests in a group tweet for mothers. This year’s brunch will be given in honor of Mothers Day Every Day and CURE Epilepsy.
It’s a ritual of spring—like Punxsutawney Phil and the Capistrano swallows—the first weekend in May is the White House Correspondents Dinner. President Reagan dubbed it “Washington’s spring prom” and it has grown into a weekend of events with D.C., New York and even Hollywood’s stars.
One of those events is the annual WHCD Garden Brunch. In 2009, hundreds of guests gathered in the garden, but there was a twist. The brunch was given in honor of the Mother’s Day Every Day campaign and featured honorary brunch Chair Ann Curry of the Today Show, with special guest Susan Axelrod of CURE Epilepsy.
Mothers Day Every Day is a U.S. advocacy group for maternal health led by the White Ribbon Alliance and CARE. Their campaign for healthy moms and newborns aims to raise the political will and resources to reduce maternal mortality around the world to meet the United Nation’s Millennium Development Goal number five.
There were some incredible moments as Captain Richard Phillips, who survived the Somali pirate attack, met Homeland Security Chief Janet Napolitano and relived his dramatic rescue for the first time. T. Boone Pickens and his wife Madeleine talked to reporters about their successful campaigns for the Pickens Plan and to save wild mustangs
And “Gossip Girl” star Chace Crawford taped a Mothers Day greeting surrounded by the star-stuck, pre-teen girls volunteering at the brunch. Arriving guests loved the adorable girls who greeted them with white ribbons, which were tied around their wrists in honor of mothers everywhere.
Since the garden brunch’s start 17 years ago, when Barbra Streisand made a surprise guest appearance, Hollywood stars in town for the dinner have made the Saturday morning event part of their itinerary. Last year’s star power included Kerry Washington, Ludacris (escorting his own lovely mother), Christian Slater, Val Kilmer, Matthew Modine, Tim Daly and Dana Delany.
Washington’s own stars—Ben Bradlee, Sally Quinn, Andrea Mitchell, John King, David Gregory, Betsy Fischer, Greta Van Susteren and John Coale, Luke Russert, Gordon Peterson and Norah O’Donnell—turned out in force to mingle with the year’s top newsmakers: Todd Palin, Alan Greenspan, and Rep. John Dingell. Last, but not least, there was a who’s who from the Obama administration in the crowd: Austan and Robyn Goolesbee, Mona Sutphen, Melody Barnes, Bill Burton and Katie McCormick Lelyveld.
Media and opinion leaders from around the country gathered including Newsweek’s Jon Meacham, Time’s Richard Stengel, Arianna Huffington, and Walter Issacson. And L.A. media mogul and agent provocateur Andrew Breitbart brought father-in-law Orson Bean, a crowd favorite. Politico’s Mike Allen posed with nephews and fans while reporters swarmed Val Kilmer to ask whether he would make a run for governor.
This year’s brunch will again honor the Mothers Day Every Day campaign, which is led by advisory committee co-chairs Donna Shalala and Ann Veneman, and co-founders Dr. Helene Gayle and Theresa Shaver. WHCInsider will supply live coverage on Saturday, May 1st, as the first guests arrive.
It’s sure to draw another stellar “cast” of characters who will enjoy a morning drink and conversation with expected—and unexpected—guests. The spring blossoms, the fun, and the gossip, are sure to get everyone in the mood for the White House Correspondents Dinner on that evening.
We are proud to support the work of CURE Epilepsy and The White Ribbon Alliance, and encourage you to make a contribution by clicking on each of the following logos.
