Only 4 Weeks Away!
Jaclyn is opening the RSVPs that are rolling in!
Our Annual Chicago Benefit is only four weeks away! The run up to these events is always a hectic, but energizing time. Every day brings new excitement—RSVP cards flood in, new and old supporters alike reach out to pitch in. And now, CURE and an interview with our amazing Dinner Chair, Bill Daley, have been featured in the Chicago Sun-Times–awesome exposure!
June 15th will be here before we know it, and I’m really looking forward to having Carole King–truly one of my all-time favorites–provide us with a special musical performance! Thinking back to how meaningful her music has been to me over the years, it is truly beyond belief that she is lending her time, energy, and phenomenal talent to help this cause.
If you’re in the area (or want to spend a fabulous weekend in Chicago!) you can still get tickets. We hope to see you on the 15th!
You’re invited!
Mothers
My friend Christy posted this blog today. Very, very often, Christy’s words and thoughts mirror mine. It’s kind of eerie. But she is so much more eloquent. Please check out her blog and read her reflections on Mother’s Day.
Holidays are always a time to reflect–like it or not. My own mom is gone ten years now. I had two of my three kids with me, which was wonderful of course. But I can’t help but think about those who may never have known their moms, or whose moms died prematurely. Or, I think of the moms who’ve lost their kids and what all the attention to this day must feel like for them. Brunches, massages, cards, flowers… they can’t take away the pain some of us may feel on this day of national attention.
Truth be told, I have had a very cynical attitude about Mother’s Day for years. I’ve always just assumed it was some Hallmark-fabricated occasion designed to sell more cards and bump up their bottom line. Certainly that is a large part of it, but I went online yesterday and found this Mother’s Day Proclamation, below, which put it in such a different perspective and made me able to get through the day without some of the sadness and confusion I normally feel on this day. It made me proud of women, mothers, and the role many of us can play in society:
The “Mother’s Day Proclamation” by Julia Ward Howe was one of the early calls to celebrate Mother’s Day in the United States. Written in 1870, Howe’s “Mother’s Day Proclamation” was a pacifist reaction to the carnage of the American Civil War and the Franco-Prussian War. The Proclamation was tied to Howe’s feminist conviction that women had a responsibility to shape their societies at the political level.
Mother’s Day Proclamation
Arise, then, women of this day!
Arise, all women who have hearts, Whether our baptism be of water or of tears!
Say firmly: “We will not have great questions decided by irrelevant agencies, Our husbands will not come to us, reeking with carnage, for caresses and applause. Our sons shall not be taken from us to unlearn All that we have been able to teach them of charity, mercy and patience. We, the women of one country, will be too tender of those of another country To allow our sons to be trained to injure theirs.”
From the bosom of the devastated Earth a voice goes up with our own. It says: “Disarm! Disarm! The sword of murder is not the balance of justice.” Blood does not wipe out dishonor, nor violence indicate possession. As men have often forsaken the plough and the anvil at the summons of war, Let women now leave all that may be left of home for a great and earnest day of counsel.
Let them meet first, as women, to bewail and commemorate the dead. Let them solemnly take counsel with each other as to the means Whereby the great human family can live in peace, Each bearing after his own time the sacred impress, not of Caesar, But of God.
In the name of womanhood and humanity, I earnestly ask That a general congress of women without limit of nationality May be appointed and held at someplace deemed most convenient And at the earliest period consistent with its objects, To promote the alliance of the different nationalities, The amicable settlement of international questions,
The great and general interests of peace.
–
Perhaps the most meaningful Mother’s Day wishes I had yesterday came into my inbox first thing in the morning. One right after the other. Sweet, sweet wishes from my friends Donna Marino and Eileen Sutula. Two powerhouse women who have been such forces for our mission and our organization. Two women whose lives have not been personally touched by epilepsy, but have chosen to help us in this fight. Words can’t describe what their support means to me, and I hope that mothers of kids with epilepsy around the globe know that we are not alone in this fight, thanks to them and so many more.
Champions!
Check out this amazing story and video that ran on MLB.com. We’ve waited years for someone like Buddy Bell to publicly acknowledge that they have epilepsy and, even though he has been able to live well with it, that there are many out there who struggle and who need a cure. He’s my new champion!
Thanks to our good friend, David Fradkin and his family. We are so proud to be a part of his team! If you’re anywhere near Southport, Connecticut, please join him on Saturday, June 9 for what promises to be a fantastic event. If you can’t get there, you can still help out by bidding on some fabulous silent auction items (hmm… just in time for Father’s Day?!). The auction runs from June 1-June 18.
And, a special shout-out to my other personal champion. Here’s Lauren marching in the opening ceremony yesterday of the Special Olympics. That’s her holding the Misericordia banner with the long brown pony-tail! Let the games begin!
Kicking off May Feeling Committed and Energized!
We’re still reveling in the good will and amazing outpouring of support from folks at last weekend’s White House Correspondents’ Garden Brunch. Celebrities galore, and the amazing venue decked out with CURE cupcakes, lampshades, and the like.
As so often happens, we also shed some tears. I met an amazing young woman, Audrey, who–despite the fact that she brought me to tears–was my inspiration for the day. I just received this email from her:
“It was wonderful meeting you at the White House Correspondents’ Brunch. The awareness and hope CURE is bringing to people is so important. It brings hope to people who feel alone and afraid for their loved ones or themselves. It is wonderful to know that there is a group that is so determined to put a stop to, as your husband said, terrorism of the brain. It was such an honor to speak with you and your husband, I will log it as a precious memory!”
Thank you!
Audrey recently underwent surgery for her epilepsy, and her courage and passion shined through her stunningly beautiful, blue eyes. Her story and words are what keep us all committed and energized.
Back at home, I met with long-time friend Susan Schneider. Susan, her husband Jim and their family have been a part of CURE from the very beginning and have helped this cause in more ways than I can count. They are gearing up for their annual golf event Drive for CURE, August 23rd and I got to snap this picture of Susan receiving her first donation for their this year’s auction!
Susan Schneider with Yesenia Morales of Capital Grille in Rosemont, IL
I’m in New York for what promises to be a great meeting hosted by our friend Joel Marcus : Neuroscience 2012 / Translating Innovation into New Approaches for Neuroscience. Drs. Frances Collins, Story Landis, and Thomas Insel–Directors from the NIH–are joining other stellar scientists from industry and academia. I will report back soon on this exciting meeting!
Beyond Belief!
It’s hard to describe the frenzy of activity and the amazing exposure epilepsy received this past weekend in our nation’s Capitol.
We are making remarkable strides in raising awareness about our cause with people who have the ability to help spread the word and make a long overdue difference for so many families. Once again, our remarkable friend Tammy Haddad featured our cause in front of hundreds of guests at her garden brunch.
Before I walked in the door of Mark Ein’s fabulous Georgetown home, I received the news that guests for the 19th Annual White House Correspondents’ Garden Brunch had already started donating to CURE.
I think this is our time. Thanks to our hosts Tammy Haddad, Kevin Sheekey, Hilary Rosen, Ted Greenberg, Mark Ein, Alex Castellanos, Bill Knapp, Franco Nuschese, David Adler, and Anita Dunn.
It was an honor to share the stage with Steve and Jean Case. You may know them as big time tech entrepreneurs and they are that. But what I learned is that they lend their expertise and passion for finding answers through their philanthropy. I am looking forward to getting to know them.
The most exciting part of the day was meeting a lovely young woman named Audrey, who has epilepsy. I received such a nice note from her today: “The awareness and hope CURE is bringing to people is so important. It brings hope to people who feel alone and afraid for their loved ones or themselves. It is wonderful to know that there is a group that is so determined to put a stop to, as your husband said, terrorism of the brain.” For Audrey and everyone else, we are committed to keep fighting!
Much thanks to Kelley McCormick, who continues to make sure that the word about CURE goes out far and wide. And special thanks to the Georgetown Cupcake Ladies who donated 600 cupcakes. Katherine Kallinas and Sophie LaMontagne, we can’t wait for your new season to begin. CURE loves you!
I’m so thrilled to welcome new friends to the CURE family too, including retired General George Casey and his wife Sheila, Lindsay Lohan, Kris Jenner, Dick Costolo from Twitter, and Mark and Ali Pincus.
An a special shout out to Hosain Rahman, from Jawbone for the Jamboxes!
Check out this incredible video of the Brunch. And, some great pictures from the Brunch below, and more on Haddad Media’s Flickr page.
The Brunch has already raised nearly $25,000! But, you can still help make this the most successful Brunch yet! Donate here to raise even more money for a cure!
with Alex Castellanos and David
- Valerie Jarrett and Elle Macpherson
with Tammy Haddad, David, Jean and Steve Case, Hilary Rosen, and David Adler
Support for CURE!
with David and Arianna Huffington
Kerry Washington and Willie Geist
Steve Clemons gets a Jambox from David Greenberg, Rosario Dawson, Willie Geist, Elle Macpherson
Georgetown Cupcakes at the WHC Garden Brunch!
AOL and Case Foundation's Steve and Jean Case, who were also honored at the Brunch
Hosts Hilary Rosen and Tammy Haddad Rally the Crowd
Special Guests Tweet for a Cause
George Clooney at the White House Correspondents' Dinner flanked by CURE ambassadors, Anne Finucane and me!
From West Coast to East…
Last I wrote we were in San Francisco for Evelyn’s great event there. Now I’m in DC gearing up for our good friend Tammy Haddad’s annual White House Correspondents’ Brunch tomorrow morning. I think in past years she has had 600 people attending… let’s see what she does this year!
Although the weather forecast doesn’t look too conducive to a lawn party, I know the sun will be shining on CURE. Tammy’s honoring Steve and Jean Case and me. Stay tuned for pictures and videos. Tammy is never without a camera!
Jaclyn packed up our well-traveled CURE lampshades for the Brunch
It’s not all about parties, though. Last week we were thrilled to welcome Mike Rogawski, Vicky Whittemore, and CURE Grantee Scott Baraban to our offices; they were in town for meetings, and dropped by for a visit.
with Vicky, Mike, and Scott who visited our office last week.
Also, we are absolutely thrilled to have launched a brand new initiative for CURE. You’ll hear more about that later, but I believe this is a historic moment for CURE and epilepsy research. We have high hopes of really making a difference for kids affected by Infantile Spasms, a particularly devastating epilepsy syndrome with potential life-long impact.
Stay tuned for pictures from the Brunch next week!
A Magical Night!
We’re still reveling in the excitement and magic of Tuesday night. Our 2nd Annual San Francisco Benefit was a great success–and so much fun! Check out some of the great photos below. And check back in a few days when we’ll have even more up!
with two of our heroes for the night--Atlanta Falcons star Tony Gonzales and Taylor Beasley, who raised enough money to purchase four tables!
David with Tracy Dixon-Salazar, PhD, who received the Heroism Award
with our event Chair Evelyn Nussenbaum
the Honorable Willie Brown ran our Fund a Cure auction
our special guest Reid Hoffman gave a great speech
the centerpieces, made by Devorah Nussenbaum, were absolutely stunning!
Check out the slideshow on our website for more pictures!
Heading West!
We’re heading back to San Francisco next week for what promises to be a spectacular event on Tuesday evening at the Four Seasons Hotel–our 2nd annual Benefit under the leadership of Evelyn Nussenbaum.
I can’t wait to welcome our amazing special guests—we’re honoring Reid Hoffman, who founded LinkedIn; the Honorable Willie Brown, former Mayor of San Francisco, is going to be our auctioneer; Tony Gonzalez, All-Pro Tight End for the Atlanta Falcons, has signed on to emcee; and we’ll have a special musical performance by He’s My Brother She’s My Sister, an up-and-coming LA band.
In the end, though, it’s much more than just the great speakers and music, or getting together with old and new friends (although I love that, too!). What really matters is that we are raising awareness and critical research funds for epilepsy. Many of our CURE grantees from the Bay Area will join us. They are a reminder of how CURE’s support is moving this field forward. They give us hope—tangible, so-close-we-can-touch-it hope, that we are moving closer and closer to a cure. After Tuesday, we’ll have even more funds to invest in cutting-edge research like theirs.
Special thanks to Evelyn Nussenbaum and her passionate and energetic Planning Committee. This morning I was on the phone with her going over the program, table assignments, and all the crazy last-minute details, when I heard her son Sammy in the background. Then I heard Evelyn say to him, “No, Sammy, that’s a different kind of mission.” A box of envelopes had just been delivered from our office to Evelyn’s home for use at the event, and on the outside of the box was a sample taped to it, with CURE’s mission statement visible. Poor Sammy read it and thought maybe this was what he had been so patiently awaiting… his very own mission sent from “Spy Headquarters”! I hated to hear his disappointed voice, but hope that we can help him in ways that he can’t yet fully understand by fulfilling our mission of finding a cure for epilepsy.
with Evelyn and Sam at last year's San Francisco Benefit
If you’re in the Bay Area and haven’t bought your ticket yet, you can do so now… or if you can’t come and just want to make a donation that will help Sammy and all the other kids with epilepsy accomplish their missions and achieve their dreams, please do so here.
One in 26
IOM President Harvey Fineberg, M.D., Ph.D. described epilepsy as “a problem remarkably hidden for such a visible illness,” and later commented that the condition is “a very serious problem that has been too long neglected as a public health concern."
One in 26 Americans will develop epilepsy in their lifetime. That’s a staggering statistic for a disease that has received so little attention and is one of the oldest known to mankind. Nobody is immune, though it strikes children and seniors at the highest rates.
This was just one of the findings of the landmark IOM (Institute of Medicine) report that was released in Washington on March 30. It’s an almost 400 page report, which details many recommendations–most with a public health focus–that will address this enormously challenging and devastating spectrum of syndromes we call epilepsy.
We’re just absorbing and processing the recommendations, and will disseminate over time. If you’re interested, you can read more here.
Mary Jane England, Chair for the Committee on the Public Health Dimensions of the Epilepsies
Committee members Christianne Heck and Joan Kessner Austin
Most importantly, though, in terms of our mission, the report cites a study showing how few government dollars are invested in epilepsy research compared to other neurological diseases (when adjusted for number of patients), which reinforces our analysis, and how the focus of epilepsy research needs to increasingly focus on cures and preventative approaches, rather than simply seizure suppression–great confirmation of our beliefs at CURE, and our research focus!
P.S. If you’re in the Bay Area, don’t forget about our upcoming San Francisco Benefit next Tuesday, with special guest Reid Hoffman (co-founder of LinkedIn). Even if you can’t attend, you can still support the benefit. Text CURE to 52000 to donate $10. Also, you’ll be entered to win 2 tickets AND an autographed Shaquille O’Neal shoe!
Walking Tall in our Nation’s Capital… and More!
What a time it was for epilepsy in Washington last week!
Alica Goldman and Jeanne Donalty at the STOP Workshop
Thursday night, Jeanne Donalty and I made opening remarks at CURE grantee Alica Goldman’s SUDEP Tissue Donation Program (STOP) Workshop. All of you who have supported CURE, or who care about this disease, would have been so proud. Alica’s work has led her to receive a prestigious NIH Award, and she is doing groundbreaking work in leading the way toward answers to this most tragic consequence of epilepsy. Jeanne stayed for the entire workshop on Friday, which included representatives from the NIH and CDC, experts in tissue procurement from other disease states, a renowned forensic pathologist from California, and other epilepsy researchers. I was at the public release of the IOM report, Epilepsy Across the Spectrum: Promoting Health and Understanding . . . more on that ground-breaking report in a few days!
Saturday was the annual National Walk for Epilepsy on the National Mall. People from all over whose lives are either personally or professionally affected by epilepsy walked the two miles to raise awareness! It was so inspiring to be a part of the walk this year.
Thanks to our amazing CURE Team! (front, from left to right): Alison, Jeanne, Mary Catherine, me, Sara, Adam, and Dale
(middle row, from left to right): Sarah, Justin, Scott
(back row): Carmita and Justin
with Carmita, Christina Sauer, Julie Sauer, and Chad Barth at a reception the night before the walk.
Photo credit: Bryan Farley
Did you know that CURE is on Pinterest now? Follow our boards! And pin us. 
