Focus on the BRAIN
President Obama’s announcement this week of the proposed $100 million Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) initiative raises hope that neurological disorders will finally begin to get the recognition and research funds needed to truly advance our understanding of the brain and how it functions. The project, which will draw resources from the Defense Advanced Research Projects Agency (DARPA), National Institutes of Health (NIH), National Science Foundation (NSF) and major private foundations–the Allen Institute for Brain Science, Howard Hughes Medical Institute, Kavli Foundation and Salk Institute for Biological Studies–will help unlock the many mysteries of disorders like epilepsy and, at CURE, we are thrilled about it, and its potential to transform lives. The President also highlighted the positive economic impact of the BRAIN project, citing the high-tech jobs that will be created by this investment in science and technology.
And to end your week on a bright note, we have yet another adorable CURE fan boasting her CURE gear!
Alice finds another use for CURE’s iPhone cover!
Have a great weekend!!!
Athletes Who Inspire
Athletes putting their creative energy to work for CURE – we are so fortunate to have so many of them hosting swim-a-thons, fencing, hockey and everything in between. Most recently, spinners in Florida, hockey players in Illinois, and runners in Georgia have all turned their passions into dollars for research!
Faith Kaplan, of Boca Raton, Florida recently hosted her second “Fly for Faith” event to benefit CURE. Dozens of enthusiasts participated in a high-energy, indoor cycling workout, and Faith’s friends and family were all motivated by her determination and commitment to advancing research in epilepsy.
Faith getting ready to “fly.”
Meanwhile, in Senoia, Georgia, Mikki Lewis hosted The Cupid Chase, a 5K run and one mile Encouragement Walk. Mikki’s inspiration is her 11-year-old daughter, Hadley, who was diagnosed with epilepsy at age six. All proceeds benefited CURE, and—we are told—the event included an actual cupid sighting! Families and individuals participated in the Chase, vital funds were raised and awareness about epilepsy was increased—a successful event any way you slice it!
Mikki Lewis with Cupid!
Closer to home, the U14 Chicago Young Americans girls’ hockey team has been raising funds for CURE throughout the season with their Shut Out for Seizures fundraiser. Their motto is “Seize YOUR Freedom,” and both their fundraising and their hockey playing have been successful—the team will be playing at Nationals in San Jose, CA this week! Good luck, girls!
CYA U14 team celebrates another victory.
The Epilepsy Foundation of Greater Chicago is hosting two 5Ks next month, on May 11thand May 18th. To register, please visit their site here. Proceeds will support programs and services for people and families living with epilepsy.
Whether indoors or out, in good weather or bad, CURE’s supporters never stop. We are grateful for their involvement and their energy—together we move, step by step, closer to finding the cures we so desperately need. Thank you Faith, Mikki, CYA and so many others —and please keep the photos and the motivation you give us all coming!
Please visit CURE’s website for more information on hosting your own fundraiser.
A Global Need for Awareness, Education and Availability of Care
Epilepsy’s reach knows no bounds—and, not surprisingly, its impact in developing countries can be much more profound than here in the U.S. and other affluent countries. Dr. Tamara Bugembe, a pediatric registrar volunteering for a fellowship in Cameroon, wrote a compelling piece in The Guardian this past week, highlighting the disparity of epilepsy care and awareness between wealthy and developing countries.
In recent years, we’ve all been aware of the bold efforts by Bill Gates and others to prevent malaria in many of these countries, however little attention has been paid to the large number of men, women and children who survive the disease, but develop epilepsy as a consequence.
We do know that, according to a 2012 study by the World Health Organization (WHO), nearly three-fourths of people with epilepsy in developing countries do not receive adequate therapies. Further, WHO estimates that, in Africa, nine out of ten people diagnosed with epilepsy go untreated.
This article was of special interest to us at CURE, as this year we are supporting our first-ever grant to research the connection between malaria and epilepsy. Under the leadership of Steven Schiff, MD, PhD, Pennsylvania State University, a multi-disciplinary team of researchers is investigating a model for the prevention of epilepsy that can develop in children after malaria. It’s a unique effort by an epilepsy specialist, a malaria biologist, an experimental physicist, a malaria clinician, and an optical imaging expert.
In Dr. Bugembe’s words, “Epilepsy is highly stigmatized and many believe it to be a spiritual rather than medical illness. It is also thought to be contagious, transmitted by touching someone during a seizure.” This misinformation, and the shunning of those with epilepsy, is painful and almost inconceivable for many of us who live with epilepsy.
Much more research is clearly needed in this area, as is the continuing need for better community awareness of and response to epilepsy—not just in our neighborhoods, but around the world. The more advances we can make in our understanding of the biological basis of epilepsy, the closer we come to finding cures, and the closer we will be to the day when epilepsy, around the globe, is viewed as a biomedical condition that can succumb to enhanced research efforts into preventions and cures.
A New Spin on an Old Topic—We want to hear your thoughts!
Many of you reading this are supporters of CURE, and may even work in the non-profit field yourselves. I encourage all of you, when you have about 15 minutes, to watch Dan Pallotta’s take on how we perceive charitable success and stewardship. I found the video fascinating and provocative, as he raises issues and concerns we face on a daily basis at CURE. Our administrative staff works very hard to ensure that 90 cents of every dollar donated goes directly to support epilepsy research—we know that many donors look for that type of fiscal responsibility before making a contribution. Adhering to this ultra-lean model, though, necessitates that we pass on some opportunities and initiatives, which may require larger financial support. Like most non-profits, we tend to focus on the 90 cents and not on how an investment now may pay off with higher returns in the future.
Please take a few minutes to watch Dan’s video—and then we’d really like to hear what you think! Does Dan have some valid points? Post your comments on CURE’s Facebook page!
And I wanted to share a little eye candy with you! I received this photo from Norah’s mom, Abby, and couldn’t resist posting. Norah is decked out with her CURE iPhone cover and shopping bag—irresistible!
Norah and her CURE gear—just one of the many kids your donation will help.
Our Kids = Our Motivation
Two brand-new non-profit organizations in the neurological field have launched and we at CURE are excited to welcome them. Epilepsy is definitely not an isolated disease; these new organizations represent serious neurological disorders that also result in, and are complicated by, seizures.
Idic15 Canada is a not-for-profit parent organization which provides resources, collaboration, advocacy and research to families living with the rare chromosomal disorder Idic15 and its variants, otherwise known as Chromosome 15q11-13 Duplication Syndrome. Therese McKirdy and Lori Eisenhaur, co-founders of Idic15 Canada and parents of children with the disorder, created the organization to increase public awareness and to establish at least one Idic15 clinic in each province. Those diagnosed with Idic15 often have seizures at some point in their lives. There is increasing evidence that SUDEP is a risk in Idic15, so management of the epilepsy and overall medical awareness are crucial.
In addition, Jeff and Renee Wuchich launched a non-profit dedicated to funding research to find a cure for Alternating Hemiplegia of Childhood (AHC), a rare children’s disorder that causes episodes of paralysis, severe muscle contractions, epileptic seizures and developmental delay. Jeff and Renee’s five-year-old son Matthew has AHC, so their motivation is intensely personal. Jeff lobbied members of Congress during International Rare Disease Day last month. Cure AHC is buoyed by research currently being conducted at Duke University, which pinpointed a gene mutation in those suffering from the disease.
We always enjoy hearing what friends of CURE are up to. It was a nice surprise to receive photos of Virginia, a 10-year-old with epilepsy. Virginia is unstoppable, as you can see! She is an avid rock climber and recently, in her very first year of competing, finished 16th in her group at the American Bouldering Series (ABS) Divisional Championship in Indianapolis. (Bouldering is climbing without ropes.) Her division included participants from 20 regions across the country! Fantastic job, Virginia!
Teaming Up and Reaching Out
I can feel the tide turning, each and every day, as more people get involved in getting the word out about epilepsy and in raising vital funds for research. In recent weeks I’ve been so encouraged by the number of personal events and initiatives created and launched by friends and family members of loved ones with epilepsy. People who believe in the power we have when we come together, and people who believe in the power of research to change and save lives.
You may have already heard about 50 Concerts in 50 States, Eric Miller’s effort to promote epilepsy awareness and raise funds over the weekend of March 22-24. At last count, due to Eric’s passion and persistence, 100+ concerts have been scheduled in 48 states. There’s likely one in your area! Check the 50 Concerts website for the latest line-up. Not only is this effort a tribute to Eric’s wife, Carolina, who passed away from SUDEP in 2011, it’s also a wonderful collaboration with CURE, Candlelight Concerts, Team Epilepsy, Epilepsy Foundation and the Doose Syndrome Epilepsy Alliance.
Another collaboration closer to home was the Re: Epilepsy fundraiser held this past Saturday in Highwood, IL. Hannah Jorjorian and her husband Chris Clark, along with Tim Loesch and his wife Melissa, joined forces to raise funds for CURE in honor of Hannah and Tim’s 10-year-old daughter, Maggie. They set out with the goal of raising $3,000–and ended up raising $17,000! What an amazing way to celebrate Maggie while raising funds for research that will help all. The CURE staff was excited to welcome Hannah, Chris and Maggie to our office yesterday, and so glad we could thank them in person!
Hannah, Maggie and Chris at our office.
An update on The Hugh A Thon boys: Jeffrey, Charlie and Hugh haven’t stopped yet! When we checked in with the boys at their swim-a-thon last week, donations totaled $11,000. They have now raised over $15,000 for epilepsy research! GREAT job, boys!!
Don’t forget to keep up with CURE’s upcoming events!
Great Wrap-Up to a Busy Few Weeks
Gardiner Lapham, Tom Frieden, MD, MPH (Director, CDC) and me
Gardiner (http://www.cureepilepsy.org/aboutCURE/bios/gardiner_lapham.asp) and I had a great meeting before I flew back home yesterday, with the CDC Director, Dr. Tom Frieden. It was a wonderful opportunity to discuss the Epilepsy IOM Report (http://www.iom.edu/Reports/2012/Epilepsy-Across-the-Spectrum.aspx) and talk about potential next steps to help patients and their families.
Finally back home, I had a great welcome back breakfast with Bogdan and long-time CURE friends Stacey Pigott and Kathy Dodd, the creative minds and boundless energy behind CURE’s popular Rock the Block event. (http://www.cureepilepsy.org/events/past.asp)
Kathy, Stacey, me and Bogdan catch up and brainstorm all things CURE.
I hope you all have a great weekend, and enjoy the extra hour of daylight on Sunday—hopefully that means this winter is soon behind us! If you happen to be in the Chicago area, stop by Northwestern University’s annual Dance Marathon this weekend. This year, the very popular student event benefits our friends at the Danny Did Foundation and the Evanston Community Foundation. More than 1,000 undergraduate students will dance for 30 hours from March 8 to 10! Check out all the details: http://www.nudm.org/
