The Danny Did Foundation works to continuously achieve our objectives of informing and educating about Sudden Unexplained Death in Epilepsy (SUDEP) and to present technologies that may assist in preventing deaths caused by seizures. The DDF’s ‘Updates’ page lists the progress we’ve made. Thanks for checking in.
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 kmalone@dannydid.org 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.
