Greetings from Bethesda, where I’m attending a landmark workshop at the National Institutes of Health (NIH)! CURE is co-sponsoring this conference along with the NIH and Autism Speaks. How exciting to see these two communities coming together for two full days to learn each other’s “language,” and really delve into what we need to do to figure out what the shared mechanisms are between these conditions, which affect so many kids. A good number of patients with autism have seizures, with estimates as high as 40%–and often this happens in adolescence. And so many kids–particularly when their seizures are poorly controlled–develop autism. We need to understand why, and how to get to solutions for all.
It’s hard to leave here without realizing that the task ahead of us is enormous, but that we are so much further ahead just by virtue of having met! Presentations and conversations throughout the workshop are certain to lead to collaborations. Presentations on resources like databases, brain banks and research networks have the potential to be shared and potentially merged, adding value for all researchers and clinicians.
It’s very inspiring! Thanks to so many from Autism Speaks and the NIH for their vision and leadership!
Busy days here at CURE, but just wanted to make sure I got to wish all of you a wonderful holiday weekend which, I hope, is filled with family, friends, beautiful weather, and good health.
Here are just a few things that have been going on:
Read this GREAT piece that ran in Pioneer Press in the Twin Cities. This is the kind of press we need–it’s so informative, explaining so well what epilepsy is. AND, what wonderful coverage for CURE!
Nothing thrills me more—and is more affirming of the hard work that goes into this fight against epilepsy—than when I receive positive news about the research CURE funds. Our grantees, Drs. Yellen and Danial (from Harvard Medical School and Dana-Farber Cancer Institute respectively), have made an amazing discovery, stemming from their CURE grant, “Seizure Resistance through Metabolic Control in Novel Mouse Model.”
For decades, neurologists have known that a diet high in fat and extremely low in carbohydrates–commonly known as the ketogenic diet– can reduce seizures that resist drug therapy. But how the diet works and why remained a mystery. This project has linked seizure resistance to a protein that modifies cellular metabolism in the brain. The research, published in the May 24th issue of the journal Neuron, may lead to the development of new treatments for epilepsy. You can read more about it here.
I know if you’re a patient waiting for answers, this whole research enterprise can feel like it takes forever–at a time when every seizure matters. And that a publication in a scientific journal (even one as esteemed as Neuron!) isn’t going to make a difference in our lives. However, I really feel this is a huge leap in our understanding and a critical step in the right direction, especially for those with uncontrolled seizures. The ketogenic diet can be so difficult to live with (Lauren was on it twice, so I have first-hand experience). But just imagine if we could find a pharmacological substitute kids could take instead that would stop their seizures!
Your commitment, strength and dedication . . . and breakthroughs like this…….are what energize us, and we will continue to lead the way toward more and more of them! Please help us find that next breakthrough… help us find the cure! Every single dollar counts.
Saturday night, I was invited to speak at a great event to benefit the Epilepsy Foundation of Minnesota. I’m told that this event is growing by leaps and bounds each year–they were up to 511 guests this year–some of whom even drove five hours to get there! That’s evidence to me that people in our community are really starting to speak up and be heard.
Each time I enter a new community, I am struck by how it feels like I’m “coming home.” It’s the most heartwarming feeling to be surrounded by amazing and inspiring family members and people with epilepsy, clinicians and researchers, members of the community who show up to support a great cause. But particularly when I speak with the family members, I often feel like we have lived each others’ lives–the shared experiences with uncontrollable seizures, side-effects of ineffective treatments, living with unpredictability, heartbreak, and loss. The nodding heads, knowing glances… unless you’ve lived it, it’s next to impossible to describe. But, if you’ve lived it, it’s almost as if you don’t even have to say the words.
We were treated to some motivational words by Coach Jerry Kill, head coach of the University of Minnesota football team, for whom–I believe–this was the first time going public about his epilepsy. He’s definitely a hometown hero. His message to all the young people there with epilepsy and their families of resilience and success, despite the fact that he has had seizures in public now and has had to deal with all that that entails, certainly earned him a standing ovation!
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!
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.
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!
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!”
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!
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!