The Danny Did Foundation works to continuously achieve our objectives of informing and educating about Sudden Unexpected Death in Epilepsy (SUDEP) and to present technologies that may assist in preventing deaths caused by seizures. The DDF’s ‘What’s New’ page overviews some of the progress we’ve made. Thanks for checking in.
April 3, 2013
On his first day of preschool, Danny’s teacher asked him, what do you want to do? His answer was, I just want to learn. Now Danny’s foundation is an ever-growing participant in learning and educating and ensuring that epilepsy and seizures are viewed in a different light by the next generation. Recently we had the opportunity to talk about epilepsy and seizure safety with students at the University of Illinois. One of them may be the next doctor, researcher, nurse, or advocate that makes the breakthrough that leads to a cure, or alters the course of epilepsy care and treatment. On Purple Day, an international day for epilepsy awareness on March 26th, our high school Ambassador Belinda Espinal spoke to medical professionals and peers about her story and inspired them to join her as an advocate. Her future is bright, and our job is to engage and empower Belicia and others like her to be a part of the awareness building and solutions that the cause of epilepsy so sorely needs. In that same vein of reaching the next generation, author Gina Restivo continues to help us raise awareness and reach the next generation by connecting with parents and kids via her second children’s book, called Speedy Shines. Many thanks to Gina for always using her creativity to advance our cause. April brings many opportunities to get out into the fresh Spring air to support epilepsy awareness: the Danny’s Girls 9-week running program for women and girls kicks off this week, led by Danny’s mom; the Annual Duck Race for Charity at Northern Illinois University on Sunday April 14th, the Epilepsy Foundation’s National Walk for Epilepsy in Washington, D.C. on April 20th; and the Zumbathon & Party in Chicago on Saturday April 27th. We welcome and encourage you to join in to be a part!
March 4, 2013
Shortly before what would have been Danny’s 8th birthday, we were proud to have DDF board member Dan Kotowski propose legislation in the Illinois State Senate that would create SUDEP education for medical examiners and coroners, and enable better reporting when a SUDEP death occurs. The legislation – Senate Bill 1226 – is in its early stages, but in partnership with many we look forward to its passage, positioning Illinois among national leaders in this important aspect of progress. Thanks to Senator John Mulroe for joining Dan as a co-sponsor of this effort. A big part of what we do is to help seizure monitoring technology arrive to families that can benefit from it. Securing clinical data behind these devices can be a drawn out process, so we were encouraged recently when Dr. Kate Van Poppel & Dr. James Wheless at the University of Tennessee Health Science Center in Memphis published results of their clinical study of the Emfit Movement Monitor from Emfit, Corp. As you can read in this abstract from the Journal of Child Neurology, the study concludes: “The Emfit movement monitor detected a significant percentage of tonic-clonic seizures in patients who were sleeping, and it may offer a means for detecting nocturnal generalized-tonic clonic seizures in children with epilepsy.” This is important data and helps doctors to confidently recommend this device as a useful resource to families who face seizures. Few things are more important in preventing seizure-related deaths than simply being present when a seizure occurs. Last week we took part in the first meeting of the newly formed SUDEP Institute of the Epilepsy Foundation of America. This is a collaborative government/non-profit effort that will provide SUDEP education & resources to people with epilepsy, medical professionals & bereaved families. Thanks to Danny and to the others that inspire us for driving this work ahead. We will report on this effort in the year to come. We are very excited for the arrival of the Northwestern University Dance Marathon event this weekend. Many thanks to the NUDM executive committee members and all the students who make this happen.
January 28, 2013
As we begin 2013, we are grateful to you for your support in 2012, which enabled our foundation to provide financial assistance to 20% more families than the year prior, now spanning across 40 states. The awareness, the fundraising and the research only matter if it returns back to make a practical difference for a family in need, and that remains our focus as we move ahead. Recently more than 325 kids enjoyed the 3rd Annual Hustle & Heart basketball clinic, which was led by coaches and players from Loyola Academy, Gordon Tech College Prep, Notre Dame College Prep and Benet Academy. Click here to see the photos. This weekend we have another opportunity to partner with high school students at at the 3rd Annual War on the Shore Basketball Shootout at Loyola Academy, when 6 schools - Loyola v Notre Dame, Evanston v Lake Forest, and New Trier v St. Viator – take the court to benefit epilepsy awareness. With 1 in 26 people developing epilepsy at some point in life, we have much to achieve. So it is fitting that we have many opportunities to make progress in the weeks and months ahead. We hope you will join us and we thank you for your support!
December 14, 2012
This week is always difficult for the family and friends who knew Danny. Three years ago on December 12, 2009 we lost a boy who brought so much happiness to the world. His smiles, his laughter, his hugs – his just being present – is missed beyond measure. As we immerse ourselves into the holiday season, I remember too what Danny was most of all: a gift. A gift to his brothers and sister, his grandparents, his aunts and uncles, his many friends, and especially to his parents. Recently we were in a place a world away: the annual meeting of the American Epilepsy Society, where neurologists and epileptologists gather to share notes about treatments and studies and to measure progress. Another important group joins this meeting every year: advocates. People and groups who give voice to patients, families and people like Danny who can no longer speak for themselves. The talk about SUDEP was prevalent. We know, though, that awareness must be a prelude to action if the worlds of science, medicine and research are ever to have a real impact on the worlds of boys and girls who are looking forward to another Christmas. Whether you buy a holiday gift that benefits our cause, consider a year-end donation, or spread our message to another family, we appreciate your support. Danny’s gift to all of us is the reminder to hug our loved ones each chance we get, to take the time to give to someone who needs it, and to enjoy each day we have while we’re here to enjoy it. It is a simple gift but perhaps the most precious of all. On behalf of the Danny’s foundation, our Board of Directors, our staff, and our family, Happy Holidays to all. Here’s to big progress in the New Year.
November 1, 2012
November is Epilepsy Awareness Month, a critical 30 days to spotlight a neurological disorder that impacts 65 million people around the world. According to a 2012 Institute of Medicine report, approximately 1 in 26 people will develop epilepsy at some point in their lives. In honor of our son, brother, grandson, nephew, cousin and friend Danny Stanton, the Danny Did Foundation works from our street to your street to assist families who are impacted by seizures. We reach out today to ask your support of our November Campaign with a $25 donation via this link: www.events.org/november. Danny Did impacts lives in practical ways through these programs:
- Counseling, support and education for families regarding seizure safety, resources for treatment, and the risks involved with epilepsy, including Sudden Unexpected Death in Epilepsy, or SUDEP.
- Seizure alarm devices purchased for nearly 145 families in need across 38 states, the District of Columbia, and Canada. Each of these families has a story about how we’ve helped improve their lives.
- Grants awarded to advance clinical trials for seizure alarm devices at leading epilepsy centers nationwide. These trials provide data that doctors need to make an educated recommendation to their patients.
- Free distribution of over 20,000 Seizure Safety informational brochures to families, hospitals and epilepsy organizations across the U.S. This material is a starting point for families new to epilepsy, and serves as a resource for medical professionals to use in presenting seizure risks to patients.
- An awareness campaign with the goal to expose and then eradicate epilepsy, which impacts nearly 3 million people in the U.S., with approximately 150,000 new cases diagnosed annually.
As many of you know, seizures can turn the world upside down, and funding for epilepsy awareness, treatment and research is woefully inadequate given the disorder’s impact. Please participate in Epilepsy Awareness Month by making a $25 tax-deductible donation at www.events.org/november to help us reach our $25,000 goal. With your support, the life of one little boy will continue to make the world a better place for families in need. Please go and enjoy your life. Danny Did.
October 18, 2012
As we head into November Epilepsy Awareness Month, the Danny Did Foundation is pleased add another leader to our board of directors, Brendan Malone. As a person with epilepsy, Brendan has effectively served in a variety of advocacy roles and knows the impact of seizures first hand. He will add strength to our cause and to the families we assist. We are honored to welcome him. Entering into Awareness Month is an appropriate time to refresh the staggering statistics that surround epilepsy. According to a 2012 report from the Institute of Medicine, approximately 1 in 26 people will experience epilepsy at some point in their lives. Roughly 150,000 new cases of epilepsy are diagnosed in the United States each year. Epilepsy ranks fourth among most common neurological disorders. And as we know too well, seizures can be fatal; it is estimated that up to 50,000 people lose their lives annually from status epilepticus (prolonged seizures), SUDEP, and other seizure-related causes such as drowning and other accidents. Those numbers shape the challenge: there is a lot of work to do. If you would like to assist in the outreach for our November Campaign, please email firstname.lastname@example.org. This is an opportunity to share your story while furthering the awareness and fundraising that we urgently need to make progress against seizures.
Sept 11, 2012
Campaign season is now in full swing and you’re no doubt bombarded with ads requesting your political vote. But there’s another vote underway – the Chase Community Giving Program – and we’re soliciting support from all sides to benefit families who are impacted by epilepsy. Customers of Chase Bank can vote for the Danny Did Foundation at ChaseGiving.com. Facebook users can vote for Danny Did here. If you’re on Facebook and you use Chase, you can vote for us twice! In this campaign, every vote truly does matter, so please take a minute to support us if you can. Recently we talked with a mom in Chicago’s Englewood neighborhood who learned about Danny Did via an NBC5 news segment about the incredible campaign being led by young Nick Curley. This mom’s 19 year-old son had started having seizures and she was at a loss about where to turn and what to do. She found our DDF website, and soon after we were able to provide support. Her son was a high school athlete and until this summer, completely healthy. “Thank you again for the wonderful gift that a needy family like mine could never afford. It is peace of mind. I just want the world to know how grateful me and my family are. Love always, Stephanie and family.” We are grateful to our many friends and supporters who help to make this type of difference! We had a great time at the Socks & Sandals Golf Outing in Minnesota to raise funds for SUDEP in the name of Jake Knapp. Many thanks to the Knapp family. Thank you always for your care and support for families battling against seizures.
August 30, 2012
Summertime was a favorite time for Danny, working up a good sweat chasing around with his brother John and then jumping in the sprinkler in the back yard with his sister Mary Grace. Simple but priceless days of fun spent enjoying summer. With Danny’s zest for sharing at heart, our seizure monitor program continues to grow and has now assisted families across 37 states. Click here to investigate if technology and devices might compliment other resources used to combat seizures for someone you care for. As we hear again and again, the difference can be life saving: “My son is 7 years old and just recently spent three weeks in the hospital with uncontrolled seizures. I had happened upon your site when researching SUDEP. No coincidences, I then contacted Emfit and received our first monitor within the last few months. That monitor saved his life on July 4th at 1 am when it alarmed and we found him turning blue after a grand mal. Again, I thank you for all that you continue to do and I am forever grateful for finding the Danny Did Foundation.” – Tom, Massapequa, New York
As we segue into Fall, new items have arrived to our DDF Gift Shop – you can check them out here – and our 2011 Annual Report is now online here. Thanks to all who took part our 3rd Annual Danny Stanton Kickball Tournament, a great time was had by all. One parting note: Families often ask, is there a way to prevent SUDEP? The short answer is no, there isn’t a known cure-all means to prevent SUDEP. For now, the best course is to encourage and engage in the strategies that can reduce the risk: increased SUDEP awareness by the public and the medical community; maximum seizure control, strict medicine adherence, lifestyle modifications, further development and use of monitoring devices that detect seizures and can alert caretakers, and, ultimately, improving the understanding of the mechanisms of SUDEP. Click here for more information – http://www.dannydid.org/sudep/ – and gain the knowledge you need.
July 25, 2012
SUDEP was in the spotlight in June at the Partners Against Mortality in Epilepsy (PAME) conference in Evanston, IL. Medical professionals, advocates and families came together to advance understanding of SUDEP and to push for more solutions. Danny Did Foundation was a proud sponsor of this conference and was grateful to have so many of our friends attend. Click here to watch the video from PAME and click here to see photos from the event. Special thanks to conference co-chairs Gardiner Lapham and Dr. Jeffrey Buchalter for organizing this first ever SUDEP conference. Our 3rd Annual Danny Stanton Kickball tournament on July 15th was a day doing what Danny loved to do: spend time with his friends and family. We have another amazing young boy spurring on Danny’s foundation these days: Be sure to check out the efforts of 7 year-old Nick Curley at www.events.org/100mileskate as he advances toward his goal to ice skate 100 Miles For Danny. Nick is a inspiring boy who is making a difference for others in Danny’s name. We hope that you take time to get out and enjoy your summer, and don’t forget to chase the ice cream truck.
June 14, 2012
Thanks to nearly 250 guests and many more volunteers, sponsors and supporters, our 3rd Annual Evening of Hearts & Hugs was a big success. Our annual gala was quickly followed by the debut of our new Danny’s Girls program, a training program for girls and women that teams fundraising with fitness. Led by Danny’s mom Mariann, the program culminated with a 5K run last weekend in Northbrook, IL. That same busy weekend included our Buzz Cuts and Purple Hair event in Chicago’s Norwood Park neighborhood, another platform for our foundation to introduce epilepsy awareness to kids and families through a day of fun. Next week in Chicago, the Partners Against Mortality in Epilepsy (PAME) Conference takes place. See below for details on attending or following the first-of-its kind conference from afar. Registration for the 3rd Annual Danny Stanton Kickball Tournament is now open! The tournament takes place on Sunday July 15th on Danny Stanton Field at Edgebrook Park in Chicago. With temps warming and Summer setting in across the U.S., we invite families, youth groups, churches, teams and organizations of all kinds to get outside and host a Bake For Danny Bake Sale. Bake for Danny is a fun, easy way to spread awareness, teach lessons of charity and raise funds to support our mission to prevent deaths caused by seizures all at once. We wish everyone a happy and safe summer.
May 8, 2012
We’re now less than two weeks from our 3rd Annual fundraiser event, An Evening of Hearts & Hugs, which is upcoming on Saturday May 19th in Chicago. We hope you can register today and join us in celebrating progress and looking ahead to more. This year our live auction will include a Group Giving Special Appeal with the goal to raise $10,000 to purchase devices for families in need. Instead of bidding against each other, participants can contribute at the level of their choice and collectively fund raise toward the goal. Looking ahead to June, be sure to see the information below about the PAME Conference in Evanston, IL, the first conference in North America to focus predominantly on Sudden Unexpected Death in Epilepsy (SUDEP). We are proud to be PAME partner in our continued quest to raise awareness and spark better understanding and a cure for SUDEP. In the past week we’ve learned of two children losing their lives to seizures, one in Mississippi and one in Massachusetts. Each day our mission is urgent. Thank you for your continued support and we hope to see you May 19th!
April 19, 2012
Momentum continues to grow for our 3rd Annual fundraiser event, An Evening of Hearts & Hugs, which is upcoming on Saturday May 19th in Chicago. We’ll be proud to honor two leading epilepsy advocates – Dr. Elson So of the Mayo Clinic, and Warren Lammert of the Epilepsy Therapy Project and Epilepsy.com – as we continue to build support and relationships that enable us to make a practical and meaningful difference in the fight against epilepsy and SUDEP. Special thanks this month goes to Jon Duresky, a grandfather (and pilot by trade) from Warner Robins, Georgia, who will be hiking a 72-mile stretch of the Appalachian Trial through Tennessee’s Great Smoky Mountains from May 21st-25th to raise awareness for epilepsy and funding for Danny Did Foundation. Click here to learn more and to support Jon’s inspiring Hike For a Cure, a move to action sparked by his grandson Conner’s battle with seizures. On a related note, we are proud to welcome Jon’s daughter Kendal O’Lenick and her husband Andrew as our new Danny Did Ambassadors in Atlanta. By sharing their personal stories, DDF Ambassadors bring our cause into new networks and communities across the U.S. As an update from last month, the Institute of Medicine Report on Epilepsy has been released. We were struck by how many of the calls to action match the efforts of Danny Did and we encourage all to review it. Thanks for your continued support and advocacy.
March 21, 2012
Here in Chicago we’ve welcomed an early Spring as an added bonus after an easy Winter. The season passed like a blur thanks to a lot of activity. More schools and events are on tap, all centered on the need for heightened awareness, more funding, more partners, and better communication, and all driven by Danny’s energy and ability to help lives that need help. After a few months of testing, we launched our Bake For Danny bake sale program; so far we’ve had hosts take part in eight states. A highlight on our list of Upcoming Events is our 3rd Annual Evening of Hearts & Hugs silent auction and dinner, which we encourage all to be a part of however you can – by attending, sponsoring, or donating an auction item. Your support will make it our best yet. Our device subsidy program will soon expand to a second device, and is up to 105 movement monitors purchased for families in need across 33 states. Later this month the Institute of Medicine Report on Epilepsy is expected to be released, it could have huge and we hope positive ramifications for our cause. Danny’s birthday was March 2nd. He would have been 7 years-old. Happy birthday Danny. We love you.
February 20, 2012
Three straight days of fundraisers – a comedy show, live music, and a Zumba workout class – kept us busy to end January. To start February we were glad to focus in our mission of raising awareness and serving families in need with practical resources. We spoke to students at both Niles West and Niles North High School about careers in healthcare, emphasizing the need for a committed next generation of epilepsy advocates and nurses, doctors, researchers and engineers who are aware of SUDEP and its toll. We also spoke to nursing students at Loyola University-Chicago, a key audience when it comes to treating seizures. Danny Did was proud to be a sponsor of the Epilepsy Therapy Project’s 2012 Pipeline Conference in San Francisco, where neurologists, advocates, families, investors, researchers and companies gathered to discuss the latest treatments for seizures. It was an important and inspiring event. While there, we met Charles Anderson, a father from Boulder, CO, who won the “Shark Tank” competition with his submission of an iPhone-based movement detector. As Charles works to bring it to market, we hope the device will become another option among Devices & Technology that people can investigate to compliment medicinal, surgical and dietary resources in treating seizures. Danny Did is committed to assisting Charles and others like him, and to raising awareness about these options among the people and families that can gain from them.
January 18, 2012
We finished 2011 with a rush of activity, from our Epilepsy Awareness Month Campaign in November, to participation in the American Epilepsy Society Conference in Baltimore, and the Epilepsy Alliance of Orange County Health Fair in California. We enter 2012 energized and focused to work toward our mission to prevent deaths caused by seizures. Just this week we held a basketball clinic where 300+ grade school kids learned more about epilepsy through a fun day with their friends. In early February, we’ll be proud to sponsor the SUDEP discussion panel at the Epilepsy Therapy Project’s Pipeline Conference in San Francisco. Registration for the Family Day is free, and we’d invite and encourage anyone in the Northwest who can make it to attend. That same month, Danny’s mom Mariann will speak to nursing students at Loyola University in Chicago and high school students in Niles, IL, all with the aim to educate and raise awareness among the next generation of leaders. Our device subsidy program will continue in 2012 – so far we’ve bought 80 movement monitors for families across 32 states that couldn’t afford one – and we’ll continue to seek out new technologies and devices that serve to compliment medicinal, dietary and surgical measures used to treat seizures. We’re locked in for our battle against epilepsy and SUDEP and epilepsy in 2012, and we hope that you’ll join us…
December 12, 2011
Two years ago today when Daniel George Stanton left the world, hearts were broken. Some time has passed and a lot of those hearts are still broken – maybe all of them – but as his sister Mary Grace wrote one day, a broken heart still beats. We’ve taken steps of late to regroup and center in on how it is we can best make a difference. During Epilepsy Awareness Month in November we spoke at the Lennox Gaustaut Syndrome Foundation Conference in Virginia to an audience of parents fiercely committed to making a better life for their children, all of whom face a heightened risk of SUDEP. Last weekend we were at the American Epilepsy Society annual meeting in Maryland, talking with neurologists, advocacy groups, businesses and families to figure out how we can funnel a wide range of ideas and good intentions into productive activity. Over the weekend we were the beneficiaries of a college basketball game between two great universities – Loyola Chicago and Northwestern - a special day for Mariann as she returned to her alma mater, LU. Some days the best thing is to keep moving, and other days, like today, it’s important to take some time. Happy holidays from Danny Did, your support is a true gift to us.
September 26, 2011
The past month has taken us from a rural park in Berkeley County, West Virginia, to the historic Drake Hotel on Chicago’s Magnificent Mile, to a health fair in Southern California, and many places in between. The Danny Did Foundation is expanding its reach by leaps and bounds, and so the time has come to get out and meet many of our new friends and advocates in person. We do that with specific goals in mind: keep Danny’s life and death at the fore; inform people about Sudden Unexplained Death in Epilepsy (SUDEP); encourage people to join us raising the profile of epilepsy. Just yesterday we introduced 125 new kids to our foundation by way of a basketball clinic. So they’ll wear their new Danny Did t-shirts around for the next few summers, and they will in time come to ask and learn about epilepsy as they get older, and they’ll come to remember our foundation as that group that ran a fun event back when. Every bit of outreach big and small comes back to awareness. Can we help move epilepsy and SUDEP into the mainstream consciousness? We think we can. If you want to learn how you can help us, visit www.dannydid.org/get-involved.
August 23, 2011
We traveled to the Twin Cities this past weekend to join an event held by our Danny Did Ambassadors in Minnesota, Dennis and Kari Knapp. Dennis and Kari and their daughter Holly included Danny Did in the 3rd Annual Socks & Sandals Golf Outing in memory of their son Jake, who was lost to SUDEP in March 2009. Since Jake passed away, the Knapps have been working hard to raise awareness and funds for SUDEP and are introducing a whole new audience to our mission to prevent deaths caused by seizures. 144 Golfers took part, a tribute to the impact that Jake had and continues to have on the world. You can learn about Jake and his fun loving way at http://jakeconnect.weebly.com/.
On the technology front, Danny Did has awarded its first grant, a $10,000 award to Smart Monitor of San Jose, CA, to help fund testing of its SmartWatch device in clinical settings including Stanford University. The SwartWatch is a wristwatch-like device that detects patterns of motion that are similar to those caused by seizures. It’s the kind of resource we wish we had 625 days ago for Danny, that we now will help to tell others about. The grant is a significant development for us, and the first of many meaningful grants to come.
July 25, 2011
It’s been a hot, hot summer and we’re cooking at the DDF. We’ve recently added a new member to our Medical Advisory Board, we’ve provided our first grant for the continued development of a promising piece of technology from Southern California, and we are making plans for participating in various events across the country through the remainder of the year. The DDF also has 50 runners participating and fundraising on its behalf in the 2011 Chicago Marathon…that’s 47 more than last year. We’ve been asked to be a part of a documentary that will debut next year and that will chronicle the effects of epilepsy on several families across the United States. And amidst all of this we are continuing to interact day-in and day-out with individuals and families who are effected by the neurological disorder that is epilepsy and to provide the support and information that was not presented to us when we were treating Danny. Thanks for checking in and please check back soon for further details on these recent updates.
June 12, 2011
Our 2nd Annual Evening of Hearts and Hugs was an enormous success as over 300 people joined us for food, music, cocktails, and auctions at Misericordia Heart of Mercy on Chicago’s North Side. Of special note during the evening were two award presentations. Our first award was for the Danny Did Foundation’s Award for Excellence in Emerging Seizure Detection Technologies. This year’s inaugural recipients were doctors at Rush University Medical Center, Northwestern University Comprehensive Epilepsy Center, and Children’s Memorial Hospital Epilepsy Center. These centers were chosen to receive this award for the ground-breaking clinical trials that they are currently conducting on the Emfit Movement Monitor. Our second presentation was the Danny Did Foundation’s 2011 High School Scholarship Award, which was presented to eigth-grader Kiernan Dunham, whose compelling essay on the importance of helping non-profit organizations and on how she will introduce and incorporate the Danny Did Foundation and its message into her high school experience earned her this inaugural $1000 scholarship. We also introduced three new members of our Board of Directors and announced that we will be providing a grant for the furtherance of the development and testing of San Jose, Ca-based SmartMonitor’s SmartWatch device.
May 9, 2011
As part of our continued efforts to educate and inform all people of all ages about the Danny Did Foundation and of the tragedy of SUDEP in particular and of the disorder of epilepsy in general, Mariann and I have recently met with a group of eighth grade students in Chicago to whom we gave a brief presentation about the DDF, SUDEP, and epilepsy. The kids appeared engaged and in an effort to sustain that engagement we offered a DDF-sponsored $1000 scholarship award for use in high school to the student who writes the most compelling essay centered around the following topics: (1) Discussion of the importance of helping non-profit organizations, and (2) a projection of how to best introduce and incorporate the Danny Did Foundation into the high school experience. The students were excited at the prospect of the scholarship and were looking forward to starting their essays. We are excited to read them and are looking forward to selecting a winner and inviting the recipient and his/her family as our guests at our 2nd Annual Hearts and Hugs Evening held on Saturday, June 11, 2011, where the scholarship check will be presented. As we always say, we want to get everyone —from doctors to seizure patients to students to the global community in general involved in our conversation. It’s the way to to get the word out and the way to get things done: Awareness without Action is Worthless.
We have also been shoring up our DDF Regional Liaisons Program and will soon have a host of extraordinary volunteers who go above and beyond to serve the Danny Did Foundation’s mission to prevent deaths caused by seizures. The main goals of each liaison are: consistent efforts toward awareness of SUDEP and the Danny Did Foundation; proactive and independent representation of our mission to prevent deaths caused by seizures; collaboration amongst each other to share ideas, solutions, and progress; and fundraising for the Danny Did Foundation. We have commitments to-date from people in West Virginia, California, Indiana, Minnesota, Missouri, Illinois, Virginia, and Japan to join the DDF in this official capacity.
And our progress with doctors is expanding as well. We are currently carefully planning to add more doctors to our DDF Medical Advisory Board; we are in close contact with the doctors who are conducting the Emfit clinical trials; and we are in the beginning stages of discussing the creation of a network that will be dedicated to SUDEP research.
April 11, 2011
As part of the Danny Did Foundation’s commitment to the advancement of awareness of epilepsy, of SUDEP, and of technologies that may assist in preventing deaths caused by seizures, as well as to our belief that everyone —from grammar school kids to nationally recognized epilepsy experts— can and should be engaged as we work to achieve our goals, Mariann and I are looking forward to presenting the first of what we plan to be many scholarship awards at this year’s Danny Did Foundation Hearts and Hugs event.
At this June 11 fundraiser, we will award one $1000 scholarship to an eighth grade student from Edgebrook grammar school. Eighth graders who wish to be considered for this award will submit an essay that answers the question: How will you promote awareness of and advocate for the Danny Did Foundation and its mission to prevent deaths caused by seizures in your high school years? Mariann and I will meet with interested students and speak to them about the foundation in the coming weeks.
Our belief in engaging everyone is a constant focus. And while challenging and encouraging doctors to improve their SUDEP communication model with epilepsy patients is one effort, bringing kids and young adults into the conversation is another undertaking altogether. Our task is this: How does the Danny Did Foundation introduce future generations of doctors, nurses, researchers, legislators, and policy makers to our cause? How do we make them care? One way is through contributing to the funding of their education via the Daniel George Stanton scholarship fund, which we have recently established and which we are working to greatly expand.
Danny Did love to learn…remember what he said to his preschool teacher on his first day of class? I just want to learn.
March 31, 2011
On April 1st, McGee Middle School in Berlin, Connecticut will hold a school assembly to announce a contribution to the Danny Did Foundation, thanks to 14 year-old student Kade Lamontagne. As part of his school’s March Madness celebration, Kade nominated Danny Did to be the recipient of a charitable prize, and, thanks to his great letter, we were selected. Kade’s younger brother suffers from seizures, and now Kade is his #1 advocate. Kade found about us, learned what we’re about, and now he acts as a brave and effective representative for our cause and for SUDEP awareness. We are proud of Kade, and glad that he took the time to nominate Danny Did. This 14 year-old student is making a difference. Read his nomination letter here.
March 9, 2011
There are people all over the country that reach out to help Danny Did, a great many because their lives have been impacted —and too often devastated— by seizures. Today we say thank you to Judy and Richard Phillips, and Judy’s 45 colleagues at the Central Rappahannock Regional Library in Fredericksburg, VA.
In memory of their grandson, Evan Oliver Phillips, who died from a seizure at 5 years old, this group raised $1,200 to support the mission of Danny Did. Bit by bit, as a caring group of people who wanted to help a friend, they pooled together the funds. The way this contribution came about means a great deal to us. Today, March 9th, would be Evan’s 6th birthday. Our love and support goes to Evan’s parents, SSgt. Jeremy and Holly Phillips. You are making a difference that Evan can be very proud of. Like Danny and Evan, the spirit and initiative of Judy Phillips and the Central Rappahannock Regional Library workers won’t be forgotten.
February 15, 2011
The clinical trials for the Emfit Movement Monitor are at last getting underway at Rush University Medical Center, Children’s Memorial Hospital, and Northwestern Memorial Hospital. While only just beginning, these studies are an enormous accomplishment for the Danny Did Foundation. These trials are groundbreaking in that a device of this sort has never before been tested in the U.S. within a collaborative setting organized by three major epilepsy centers. An exciting development in this testing is that the centers are also looking at advanced capabilities of the monitor that have recently been introduced via software upgrades to the device.
We are also currently shoring up the second version of our Seizure SafetySUDEP Info brochure. Some updated and reorganized copy are the major changes in version two, which will be sent to the printer in the next couple of weeks. We are happy to assist anyone who would like to display this informational piece in a hospital, doctor’s office, epilepsy center, school, library, or any other place that would benefit from presenting this information. Please contact the DDF’s Outreach Coordinator Kathleen Malone at email@example.com to make arrangements. This updated edition will also be available in a Spanish-language version in the coming months.
The DDF thanks Phil Gattone and the Epilepsy Foundation of Greater Chicago for their partnership and their friendship in these endeavor of ours. More than anyone, though, the DDF says thanks to Danny Stanton, whose energy and enthusiasm continue to positively affect the lives of all who work to not only advance awareness of SUDEP, but of finding ways to prevent deaths caused by seizures.
February 1, 2011
Today in America, a news show hosted by Terry Bradshaw, is now airing a segment on the Emfit movement monitor and the Danny Did Foundation. In February the piece will air on Saturdays at 8am on ONN in Ohio; Saturdays at 6:30a in the Phoenix area on KAZ-TV; and Sundays at 6:30a in Pittsburgh on PCNC. More locations to come. To view the video, click here and select “Today In America Segment.” To date, the Danny Did Foundation has provided 27 seizure monitors to families across 19 states!
January 4, 2011
Today marks one year since a collection of words and pictures were posted on Facebook under the heading of the Danny Did Foundation. The DDF has since established itself as an organization relevant to the cause of fighting to prevent deaths caused by seizures. While still in our infancy, we’ve made many friends and many inroads into achieving our goals. Read the first of the DDF’s annual newsletters here.
December 7, 2010
DDF Kids’ Liaison Mary Grace Stanton has already received over 50 “Get Seizure Smart” quizzes from kids eager to learn more about epilepsy! That’s an incredible start for MG, who is busy grading the quizzes and then returning them along with a DDF bracelet. The Danny Did Foundation strongly believes that engaging kids in the battle against epilepsy is an effective and a winning strategy…and one the Danny himself is proud of.
Separately, the DDF had a successful trip to the American Epilepsy Society’s conference in San Antonio, TX, where we engaged doctors, epilepsy organizations, and medical technology companies. We’re glad to be back and ready to build and nurture our new relationships in our continued effort to prevent deaths caused by seizures.
December 1, 2010
DDF board member Scott Verhey and executive director Tom Stanton will be attending the American Epilepsy Society meetings on Dec. 5-6 in San Antonio, TX. Scott and Tom will be meeting with doctors and medical technology companies to continue the DDF’s advancement of SUDEP awareness and gain the latest information on advancement in seizure detection and prediction technologies. The DDF has also recently welcomed Mary Grace Stanton aboard as our volunteer Kids’ Liaison. See all the details at http://www.dannydid.org/kids-liaison-mary-grace-stanton.
November 12, 2010
The Danny Did Foundation’s reach continues to grow as we have now subsidized 18 Emfit Movement Monitors across 12 states. We are grateful to be able to provide these to families and plan to expand this program to more devices and to more people as we are able. We are also preparing a Spanish version of our Seizure Safety/SUDEP Info brochure (co-produced with the Epilepsy Foundation of Greater Chicago) and intend to have this translated and distributed before the end of the year. Also, our $25 Danny Did Epilepsy Awareness Month campaign is underway. We hope to raise $50,000 via 2000 contributers this month! Learn more here!
October 19, 2010
Subsequent to outreach from the Danny Did Foundation and the Epilepsy Foundation of Greater Chicago, the Emfit monitor is currently entering clinical testing trials at three epilepsy centers in the U.S. We’re told that the speed at which this has happened —and the fact that multiple centers are involved— makes this is a rare and meaningful feat. This is a process that we are seeking to replicate with other seizure detection and seizure prevention devices, and through cooperation with manufacturers, universities, hospitals, and other interested parties we intend to do just that. It is organizations like Danny Did in the U.S., Epilepsy Grief in Australia, SUDEP Aware in Canada, Epilepsy Bereaved in the UK and all of the other foundations and charities —both large and small— across the globe that are effecting real change in the way SUDEP is approached and battled both in medical settings and and in the homes of those afflicted by seizures.
September 28, 2010
To date, the DDF has sent out over 8,000 of the Seizure Safety/SUDEP Info brochures that we’ve co-produced with the Epilepsy Foundation of Greater Chicago. These have proven to be a useful tool as several epilepsy organizations and hospitals across the country are now providing these informational pieces to seizure disorder patients. We are happy to be involved in this small way. Thanks Danny, you continue to make the world a better, safer, and more informed place. And speaking of the world and places in it, the DDF continues to grow its presence and will be represented in various capacities on October 17 at Paul’s Run in Prospect Heights, IL, and also on October 17 at the Freedom Walk in Pasadena, CA.
September 7, 2010
The Danny Did Foundation announced today the introduction of our inaugural member of the DDF Medical Advisory Board, Dr. Marvin A Rossi. Dr. Rossi is an Assistant Professor and Attending Physician at the Rush Epilepsy Center of Rush University Medical Center in Chicago. As a teacher and physician, Dr. Rossi is dedicated to seeking out and providing the most up-to-date information and treatments to his students and patients. As a researcher, Dr. Rossi is most interested in the development and implementation of new detection and control technologies that stabilize dysfunctional neural pathways.
The DDF Medical Advisory Board is a select group of medical professionals with a specific interest in confronting and solving the riddle that is Sudden Unexplained Death in Epilepsy (SUDEP). Members of the DDF Medical Advisory Board act as medical experts and representatives of the DDF who share its vision of openly addressing SUDEP and who believe in the goal of preventing deaths caused by seizures. Welcome aboard Dr. Rossi!
September 4, 2010
As part of our ongoing research into technologies and devices that people should know about, the Danny Did Foundation has now subsidized 10 seizure alarm monitors for families spanning eight states, from California to New Jersey. Many of these families didn’t know about SUDEP until finding Danny Did. Now they do, and now they’ll tell others, and the chain of empowerment will spread. Danny leads the way.
The Danny Did Foundation continues to seek out emerging and promising technologies and devices for families and caregivers of seizure disorder patients to consider as options in caring for loved ones at home.
August 9, 2010
Dr. Kate Riney of Mater Children’s Hospital in Brisbane, Australia and Lisa Krause of Epilepsy Grief in Australia are leading the charge Down Under as they have teamed up to get the Australian government and Australian hospitals to look more closely at seizure detection technology devices such as the Emfit Movement Monitor. In an extremely positive turn of events, doctors in Australia have requested contact information for the doctors in Chicago with whom the DDF has met to discuss seizure detection technology. Preliminary indications are that the Aussie docs want to test the Movement Monitor in their epilepsy centers as the Chicago docs plan to do and then pool their results to produce a greater volume of data. More to come as we are briefed in the coming weeks.
July 30, 2010
The DDF has placed another Emfit Movement Monitor with a family in Michigan. We’ve also been receiving positive feedback from previous recipients. This encouragement continues to inspire us as we strive to reach a larger audience with our message about the existence of SUDEP and the existence of strategies to combat SUDEP.
July 3, 2010
The DDF has placed two more Emfit Movement Monitors with two more families, one in Chicago and one in San Diego. We continue to support this technology and recommend that parents and caregivers of those with seizure disorders investigate its efficacy for themselves. On another front, the Seizure Safety/SUDEP Information brochure continues to be distributed in hospitals across Chicago. We have inquired with and are awaiting responses from emergency room doctors and pediatricians’ offices as to their willingness to make this piece available to their patients. And we continue to receive a constant stream of emails and phone calls from people affected by epilepsy who are completely unaware of SUDEP. So the mission continues.
June 8, 2010
The Danny Did Foundation kicked off its Get in the Game to Advocate for Epilepsy Funding campaign today. The objective of the campaign is to have DDF supporters contact their elected officials and request (demand!) more government funding to combat epilepsy. This manageable and meaningful idea grew out of Illinois State Senator Dan Kotowski’s remarks at the DDF’s Hearts and Hugs fundraiser in May.
Another sprout from the DDF’s Hearts and Hugs fundraiser in May was the donation of three Emfit Movement Monitors to the Foundation by some very generous participants in a live auction. The DDF today has sent out two of the donated Emfit Movement Monitors, one to a family in North Carolina and one to a family in South Carolina. The third donated Movement Monitor will be heading out to a family in California in the next few days.
And the Seizure Safety/SUDEP Information brochure published jointly by the Danny Did Foundation and the Epilepsy Foundation of Greater Chicago is now starting via Chicago-area hospitals to get into the hands of patients and loved ones of those afflicted by seizures. More to come soon!
May 19, 2010
The Seizure Safety/SUDEP Information brochure published jointly by the Danny Did Foundation and the Epilepsy Foundation of Greater Chicago is now online at http://www.dannydid.org/resources. The printed version of this publication will be distributed to epilepsy centers, pediatricians offices, and epilepsy organizations across Illinois and beyond. This brochure outlines some of the most important areas of concern that parents of children with epilepsy are likely to have — and there are a lot of these parents out there: each year, 45,000 children under the age of 15 are diagnosed with epilepsy in the United States.
May 13, 2010
Emfit Corp. presented its Movement Monitor system to Children’s Memorial Hospital yesterday, and the report given to the DDF was extremely positive. Not one or two, but eight doctors participated in the demonstration. All were impressed, and Children’s —like Rush University Medical Center, Loyola University Medical Center, and Northwestern Memorial Hospital— were impressed enough to request that Emfit provide the hospital with four monitoring systems for the hospital to test in its epilepsy center.
To date, in the wake of Danny’s death, the DDF and the Epilepsy Foundation of Greater Chicago have approached four of the top doctors at four of the top epilepsy centers in Chicago and introduced them to an emerging technology that senses seizure activity and sounds an alarm when such activity occurs. All were skeptical of the Emfit technology, but all were willing to listen and to learn. Now all four have seen the technology for themselves and all four want to test it further in their respective epilepsy centers. We will report on the results. In a related matter, the DDF has recently been in touch with a company in California with an interesting take on a seizure detection device. The company has requested a meeting with the DDF in Chicago in the coming months to demonstrate its technology. We will also report on these findings.
Separately, the DDF/Epilepsy Foundation of Greater Chicago’s Seizure Safety/SUDEP Awareness piece is complete and has been sent to the printer. The publication outlines some of the most important areas of concern that parents of children with epilepsy are likely to have, and there are a lot of these parents out there: each year, 45,000 children under the age of 15 are diagnosed with epilepsy in the United States.
May 5, 2010
The DDF and the Epilepsy Foundation of Greater Chicago have completed all content and design aspects of our Seizure Safety/SUDEP Awarenesss piece. We have now sent the publication out for a final review from top doctors in the Chicagoland area to assure that the piece contains information that is both accurate and useful to doctors and patients. Our next step will be to print 5000 copies for distribution in hospitals, pediatricians offices, and epilepsy centers throughout Chicago and beyond.
April 21, 2010
We have two exciting areas of progress to report. One, the brochure we are creating in partnership with the Epilepsy Foundation of Greater Chicago is closer to completion. This piece will soon be available in hospitals and doctors’ offices all over Chicagoland, educating families about the safety risks associated with epilepsy, with an emphasis on Sudden Unexplained Death in Epilepsy, or SUDEP. This brochure will be a tangible, difference-making resource that parents of epileptic children can use to improve their families’ quality of life.
Secondly, the Danny Did Foundation is working closely with Illinois State Senator and Danny Did Foundation Board Member Dan Kotowski regarding exciting news to be announced at our “Hearts & Hugs” event on May 22nd at Misericordia. This development involves statewide awareness building for epilepsy, SUDEP, and the Danny Did Foundation. We are also continuously meeting with non-profits and business leaders to learn the best practices for growing our Foundation and achieving our mission. Stay tuned for more updates.
March 24, 2010
The DDF met today with the Epilepsy Foundation of Greater Chicago. Many issues were discussed, including the National Walk for Epilepsy being held this weekend in Washington, DC, emerging technologies in seizure-detection devices, and deep-brain stimulation research. Chief among the topics discussed, though, was the determination that the Epilepsy Foundation of Greater Chicago and the Danny Did Foundation will collaborate immediately in an effort to create, print, and distribute information regarding Safety in Epilepsy in general and Sudden Unexplained Death in Epilepsy (SUDEP) in particular.
We have set the following schedule for this effort:
- > have an informational pamphlet/brochure designed and populated with content and available for further review by the second week of April
- > have final revisions to design and content completed by the end of April
- > print completed informational piece
- > distribute/make available to general public via neurologist and epileptologist offices, Epilepsy centers, pediatricians’ offices, and hospitals
The DDF also heard from Emfit today that their demonstration of their bed-sensor technology went well at Northwestern, and that Children’s Memorial has set a firm date for a demonstration in May.
March 15, 2010
The DDF received good news today…Children’s Memorial Hospital has contacted us and stated that they are going to go ahead and schedule a product demonstration with Emfit, sometime in May. So that’s four for four! All four hospitals we’ve had meetings with have now agreed to follow-up demonstrations of the Emfit technology.
March 5, 2010
We have been informed by Emfit that Northwestern University’s Comprehensive Epilepsy Center in Chicago has agreed to a demonstration of Emfit’s Movement Monitor device. This is another positive step. As more experts test this device, and if those experts deem this a reliable piece of equipment, they will write about it and share their findings with their colleagues. This buzz will lead to more interest and more testing. All of this can lead, we think, to full-blown clinical trials and ultimately to the FDA approval process. For our part, we will continue to make sure that doctors are aware that this type of device exists.
March 4, 2010
Subsequent to our meetings with doctors at Rush University Medical Center, a 17 year-old epilepsy patient from Rush was, via the Danny Did Foundation and Emfit, provided an Emfit Movement Monitor for the patient’s home use. The patient has since reported: the Movement Monitor is user-friendly, it detects well, and is easy to set up and calibrate. The only negative reported is that the device does not have a remote alarm. Emfit has since stated that they are working on this feature.
Other news from Rush subsequent to our initial meeting: One of the doctors in our meeting stated that patients should know about SUDEP, but that doctors shouldn’t talk about this until at least the second meting between the patient/patient’s family and the doctor. Which could mean not until the patient has had at least two known seizures. We scratched our heads as we talked about this. We have now been told that this particular doctor has recently seen a new patient–a seven year old boy with a new onset of seizures— and the doctor not only informed the patient’s family about SUDEP during their first meeting, but also about considering the Emfit device. Thank you, Danny.
And that’s really what we’re here for. To encourage doctors to inform patients about the full range of possible outcomes related to seizure disorders and to offer families options for caring for the patient at home.