March 29, 2016
You may have seen the recent news that the daughter of actor Harrison Ford, Georgia, is among the millions of Americans who cope with epilepsy. Ford is even auctioning off the iconic leather jacket that he wore as Han Solo in Star Wars to benefit epilepsy research. Celebrity can breed awareness, and the willingness of Ford to publicly advocate is progress.
The DDF is excited to introduce three new members to our team of Danny Did Ambassadors: Chelsey Loeb in New York City, Sasha Pina in Nevada and Wendy Miller in Indiana. Each has a story of perseverance and a willingness to share it that will enable the Danny Did Foundation to reach new people and places that we wouldn't otherwise. You can click here to read about all of our DDF Ambassadors, who now span 15 states.
Next month at the National Walk For Epilepsy on April 16th in Washington, D.C., the Danny Did Foundation will co-sponsor a Remembrance Wall to honor those who have lost their life to epilepsy. If you would like a memorial flag decorated to honor your loved one, email email@example.com to share the name, a photo and your message to display. As the epilepsy community comes together at this national event, lets be sure to include the people who are lost but who will always be with us.
February 29, 2016
Every four years we have one extra day to make something of. This year, this opportunity falls on Rare Disease Day. Although epilepsy in general is not a rare disease, many people living with seizures have a rare epilepsy syndrome. We encourage you to visit this website to learn how you can support Rare Disease Day with one easy but meaningful click.
The DDF is proud to introduce three new members to our Board of Directors, Mary Eileen Murtaugh, Jerry Luo and Lynn Hanley. Each brings a passion to help and a skill set that will make us stronger as we work toward our mission to prevent deaths caused by seizures. You can read about our Danny Did Foundation board members here. We give them a warm and grateful welcome.
This Wednesday March 2nd would mark Danny's 11th birthday. As does his impact on the world, his family's love for him continues to grow.
January 27, 2016
A new year is a good time to reflect and rejuvenate. As the Danny Did Foundation enters into its seventh year, we do so inspired by the families that we've met and whose stories have become an inspiration to our cause. Just recently we funded our first monitoring device in Alaska, a reminder that Danny's love and impact can always reach new people and places in the world.
We are happy to introduce you to two new Danny Did Ambassador families - the Langfords in Idaho and the Abrams in Pennsylvania - both who have suffered through the loss of SUDEP but who now work to bring change. We're also excited to announce the chance to secure your guaranteed spot the 2016 Chicago Marathon via a Danny Did charity entry. We invite runners from around the country to take part. For our Chicago area friends, the Hustle & Heart basketball clinic for boys and girls in grades K-8 is upcoming on February 15th. This is a day that kids do not want to miss! With your friendship and support, we look forward to making 2016 a year of progress and empowerment in the fight against epilepsy and SUDEP.
December 16, 2015
This past Saturday December 12th marked six years since Danny Stanton died from Sudden Unexpected Death in Epilepsy. SUDEP is the number one cause of death in epilepsy, but still is not commonly discussed with patients. Danny would be 10 years old today, patrolling the school hallways in fifth grade and getting ready for Christmas with his siblings. These are the anniversaries that no family should have to experience.
In 2015, more people than ever reached out to the Danny Did Foundation for support and information. Danny's way would be to help each one, and through his foundation, his mighty-Irish-smiling presence continues to be felt. At the American Epilepsy Society meeting this month in Philadelphia, Dr. Tobias Loddenkemper of Boston Children's Hospital said something simple but profound about the communicating the risk of SUDEP: "If we warn parents, we can make a difference." We ask your help in spreading that message until SUDEP awareness becomes the standard. Thank you for the difference you have made for our cause this year. We wish you Happy Holidays, a Merry Christmas and our high hopes for a happy and healthy New Year.
November 20, 2015
This past weekend, the Chicago Blackhawks supported National Epilepsy Awareness Month at a game for the first time. After outreach from a young advocate with epilepsy named Erin Gard, team Chairman Rocky Wirtz took action. We appreciate the Stanley Cup champions growing awareness around a disease that is too often hidden from public view.
As another channel for awareness, our new Danny Did video can be viewed here. Please take a second to share this video with a friend, parent, or neighbor. Telling Danny's story is our path to reaching more families in need.
During November Awareness Month, our partnership with Someone Special Books continues, and 10 percent of each sale of their epilepsy picture book will be donated to Danny Did. A collaboration with TG Bears Inc brings 50 percent of each sale of their Epilepsy Teddy Bear to our cause. Please consider either as a gift during the holiday season.
As we head into Thanksgiving week, we remember this quote: "Gratitude can transform common days into thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings." Our gratitude goes to you for all that you mean to the Danny Did Foundation!
October 21, 2015
Increasing public exposure to what epilepsy is and the families who are impacted is critical toward progress. We have two Danny Did radio campaigns underway to promote epilepsy awareness and our upcoming Hearts & Hugs Chicago event. This PSA was recorded by Danny's older brother John, and this edition was read by Chicago radio personality Lin Brehmer. Please take a minute to listen and to share the links with friends.
Friday October 23rd is international SUDEP Awareness Day. This effort that started in England has now spread around the world.
We're happy to announce a partnership with Someone Special Books, makers of personalized books for children facing special needs. Now through the end of November, 10 percent of each sale of their epilepsy picture book will be donated to Danny Did. This book is designed to encourage acceptance and understanding for children with epilepsy.
A word of congratulations and thanks to the members of Team Danny Did in the Chicago Marathon, which included runners spanning 12 states. If you'd like run a race near you for Danny Did, please let us know!
September 23, 2015
As summer turns to fall, we're grateful to the members of Team Danny Did who are training hard for the Chicago Marathon. Runners from 12 states are fundraising to benefit our mission to prevent deaths caused by seizures as we approach race day on October 11th. Each runner has a story and many run for lost loved ones. Please consider a donation to recognize their special dedication!
Registration for our fall Chicago gala is going strong. The night will feature cocktails and small plates; live jazz; awards and comedy; easy garage parking and cocktail attire. Supporting this event is one way that you can give hope to a family facing epilepsy. So many of them need our collective encouragement and love. We hope to see you there!
August 24, 2015
We been fortunate this month to talk about Danny's story and to advance education around epilepsy and SUDEP in the community. Thanks to our Danny Did Ambassador in Southern California, Cindy Mitchell, we had a booth at the Inland Empire Disabilities EXPO in Riverside, California. In Chicago, Danny Stanton's mom Mariann spoke to the freshman class at Howard Taft High School. Each of these is opportunity to reach a new family in need.
On the policy front, a new law recently passed in North Carolina that requires the state's medical examiners to identify deaths attributable to sudden unexpected death in epilepsy. Both Illinois and New Jersey have similar legislation in place.
Please help us spread awareness by sharing this this article from DePaul University athletics. It tells the story of DDF intern R.J. Curington, and the impact that a boy he never met has had on his life. The piece reminded of words Danny's dad wrote years ago:
"And now life continues - in many respects - albeit without the soft bounce of one little boy's feet upon the dirt of the Earth, and the family that was is now the family that is. Our Danny boy has entered a new phase, part of which is in the form of his organization, the Danny Did Foundation, which derives from the last line of Danny's obituary: Please go and enjoy your life. Danny did."
We recently added Puerto Rico to the list of places that we have reached to provide support. Because of you, we can.
July 28, 2015
Earlier this month, our 6th Annual Danny Stanton Kickball Tournament in Chicago brought out more than 300 kids and their families to enjoy a game that Danny loved. Cincinnati Reds pitcher Sean Marshall was there with his family to make it an extra special day. These photos show the smiles and excitement. We thank all who volunteered, sponsored, and played!
Sports also helped to grow awareness last week at Bounce Out the Stigma Chicago, a free basketball clinic for kids with epilepsy that was co-hosted by Danny Did and the Epilepsy Foundation of Greater Chicago. Players from DePaul University - including DDF intern R.J. Curington - volunteered and added to a day of fun and new friends in a stigma-free environment. Click here to listen to a news recap of the event on WBBM-AM radio. In the heart of summer, we hope you take time to get outside to enjoy family and friends. Great memories are waiting to be made!
June 22, 2015
Nearly 50 adults and kids came out as members of the Danny Stanton Running Club for a 5K run in Northbrook, Illinois in support of epilepsy awareness this past weekend. We thank them for taking part in a great day. We invite you to click here to view our summertime events calendar, in hope that we can see you soon.
Today is the last day of the Art Van Charity Challenge. With your help, the Danny Did Foundation has raised $26,100! If we reach $30,000, we can fund seizure-monitoring devices for 60 new families. You can donate online HERE. Our funding application to attend Epilepsy Awareness Day at Disneyland this November is now available, please email firstname.lastname@example.org for details. Please share with families who might like to attend. We want a huge crowd of purple!
April 30, 2015
Earlier this month at the National Walk For Epilepsy in Washington, D.C., thousands of supporters rallied against a disease that will impact 1 in 26 Americans. Danny Did partnered with the Epilepsy Foundation to co-sponsor the Remembrance Wall, to honor the men, women and children lost to seizures. This short video offers the sights and sounds of the flags, far too many. Our aim is to prevent new additions next year. Also in April, our partners at Ambry Genetics distributed Danny Did informational brochures at the American Academy of Neurology annual meeting. This event draws 13,000 neurologists, an audience we are working to reach to urge them to share all the risks of epilepsy - including SUDEP - with parents and their adult patients. The epilepsy community deserves full disclosure about a risk this serious. On the research front, our effort to encourage data behind monitoring devices that can alert to seizure activity expanded with funding for a clinical trial of the SmartWatch device at Boston's Children's Hospital. You can read about that here.
March 19, 2015
After a long winter, spring is a time for renewed energy and action. If you're antsy to get outside and moving, we invite you to join Team Danny Did to mesh exercise with advocacy. Next week on Purple Day March 26th, Danny Did will join several affiliates of the Epilepsy Foundation in traveling to the Illinois capitol of Springfield to meet with elected officials on the 2nd Annual Illinois Epilepsy Advocacy Day. If you'd like to share your Purple Day plans with us, please let us know! Each action makes a difference.
Next month on April 11th at the National Walk for Epilepsy in Washington, D.C., we'll be proud to co-sponsor a Remembrance Wall that honors the many lives lost to epilepsy. This event is an important stage for SUDEP awareness. If you will be there, we invite you to stop by the Remembrance Wall area. Education is on tap for April as well: Through our partners at the SUDEP Institute, more than 250 medical examiners are registered for an April 1st webinar that discusses the North American SUDEP Registry and the importance of identifying the role that seizures can play in a death. On April 8th, Partners Against Mortality in Epilepsy (PAME) will host a webinar about medical cannabis or cannabidol (CBD) as a potential treatment option for people with epilepsy. If you've wondered if CBD could help your loved one, or want to learn about the experiences of other families, don't miss this webinar.
It was 10 years ago on March 2nd that a baby boy named Daniel George entered into the world. Our gift to you Danny is to love a little harder, to squeeze tighter, to go for more. Your gift to us was just being you. You're always with us through your foundation.
February 23, 2015
On February 9th, Danny Did participated in the first ever International Epilepsy Awareness Day, as coordinated by the International League Against Epilepsy. We put out a call for friends to raise awareness, and in typical fashion, our supporters got involved. High school students as near as Buffalo Grove, Illinois and as far as Jamaica, and college students from Indiana to Pennsylvania were among those who took time to raise awareness of epilepsy in their communities. The campaign even reached rural communities in Africa. There are several days and even a whole month that are designated to raising epilepsy awareness. So why is a new one important? When a disease impacts more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined - yet receives fewer federal dollars per patient than each of these - the short answer is, we need every chance we can get to remind society that epilepsy is a global health issue that needs attention, funding, and solutions.
Last week our 5th annual Hustle & Heart basketball clinic featured fitness and education in a gym where Danny would have no doubt spent countless days. More than 300 kids learned about epilepsy and seizure safety while enjoying a day off of school with their friends. This local news report captures the spirit of the event. In ways big or small, each of us can bring awareness and education to our communities. Let us know how we can help.
January 20, 2015
Thanks to your support, our device subsidy program helped 22% more families in 2014 over the year prior. That's 22% more families who gain peace of mind knowing they'll be notified if their loved one needs attention during a seizure. We also increased the scope of our reach to 47 states and 6 countries.
Earlier this month, we hit the 5-year mark as a foundation. As we enter in 2015, we do so bolstered by two new members to our board of directors: Margaret Storey and Jeanine McShea. Margaret is the parent of a daughter with Aicardi Syndrome, a rare and debilitating condition that causes early-onset, intractable seizures as well as a range of developmental and physical disabilities. Jeanine is mother to two adult children with epilepsy. We're excited to work with both of these dedicated advocates for a new year of offering practical, immediate support for families facing seizures.
In the past week alone we've learned of three families losing a child to a seizure. "He was the best teammate we ever had," and, "her favorite color was purple" are the types of recollections we've heard about those who died. No family wants to talk about their child in the past tense. The sense of urgency that birthed our cause in 2010 is present today as we work to enhance communication, education and research around the risks that accompany epilepsy, including SUDEP. Please join us for a new year of advocacy and making change. Whether you're a parent, doctor, student, or friend, we are stronger with you!
December 16, 2014
Last week, December 12th marked 5 years to the day that Danny Stanton was lost to SUDEP. It was a morning that his family will never forget, when Johnny Stanton woke up in his top bunk bed, and his little brother in the bottom bunk beneath him did not. That day will always serve as a haunting reminder that no family should be uninformed about the risks that face their loved ones.
Our recent trip to the American Epilepsy Society conference in Seattle lent more evidence that awareness of SUDEP is gaining real traction in the epilepsy community. But there is much more work ahead in 2015 to ensure that SUDEP is disclosed by all doctors when they diagnose a new patient with epilepsy. With your support, we are helping to bring epilepsy out of the shadows for the 1 in 26 Americans that will develop this disease in their lifetime. Whether it is through a year-end gift, sharing information about Danny Did on social media, or talking about SUDEP and epilepsy within your networks, you are helping to advance our mission to prevent deaths caused by seizures.
As someone who has lived with epilepsy for over 25 years, the dedication and commitment from our supporters means so much to me. I am honored to serve in this role for DDF, and on behalf of our board of directors, we wish you a very happy holiday season. Thank you for all you do to help us spread Danny's story, elevate awareness, and support families who are anxiously seeking hope. Wishing you a joy-filled - and seizure free - holiday season! - Carrie McAteer, DDF Board President
November 19, 2014
Ten years ago Kristin McShea was sitting in a hospital after experiencing her first two seizures on the same day. She was a high school sophomore. There were no triggers, no warning, and no family history. Her shock and the uncertainty of what was to come was overwhelming. Fast forward through the past decade: Kristin graduated from the University of Dayton, studied abroad in Europe, climbed to the top of Machu Picchu, and sailed on the world's oldest full-rigged Norwegian tall ship. And she has another "to-do" list for the next 10 years.
After learning about Danny Stanton's story, Kristin became a volunteer for Danny Did and took on the task of sending families affected by epilepsy information that could assist in their own care. Today she is member of the DDF Young Professionals Board.
After numerous tests and changes in treatments, she knows her battle to control her seizures will be ongoing. But as she reviews her journey with this disease, she sees the good. "The relationships I have gained with the Danny Did Foundation have helped me appreciate the amazing support I have. It's been a portal for me to be a positive force and educate others about epilepsy's challenges and developments. 1 in 26 will develop epilepsy in their lifetime, and I am one of them. It has affected my life, but I won't let it stop me. I'm thankful to the DDF, my family and friends for getting me to where I am today."
During November National Epilepsy Awareness Month, we thank Kristin for her generosity in sharing her story. And we encourage you to share your stories too. Each one makes a difference in the journey toward awareness and progress. You can watch our unfolding tale in our new Danny Did video. Wishing a Happy Thanksgiving to all.
October 23, 2014
Today October 23rd is the first annual SUDEP Awareness Day, a international campaign started by our friends at SUDEP Action in the United Kingdom. This day is meant to educate society and people facing seizures about the number cause of death in epilepsy: Sudden Unexpected Death in Epilepsy. This is also a day to commemorate those who have died of SUDEP. We invite anyone who has lost a loved one to SUDEP to use the hash tag #SUDEPAwarenessDay in sharing photos and memories today on social media. We also encourage everyone to read and share more about SUDEP at www.dannydid.org/epilepsy-sudep. Too many families still do not know that this risk exists.
Last week Team Danny Did went strong in the 2014 Bank of America Chicago Marathon and had a huge impact to spread awareness of epilepsy and SUDEP in the 2nd largest marathon in the world. Runners from 10 states join to run proud for the 1 in 26 Americans who will develop epilepsy in their lifetime. We thank each runner, your families, and your supporters for going all in! Thank You Team Danny Did!
November is National Epilepsy Awareness Month. Danny Did has been featuring this radio campaign to spread the word. Let us know what creative things you'll be doing?
September 9, 2014
Recently Danny Did was able to help our first family in the state of Hawaii to secure a monitoring device for their son, Josh. Our device program has now assisted families spanning 47 states and six countries. It advances our goal to help parents and adults with epilepsy to gain practical resources that can help to prevent deaths by enabling early intervention when seizures occur. Josh's mom says, "You can only imagine the sense of gratitude and relief that my husband and I now feel knowing that Josh will now have the freedom to live a more normal life." You, our supporters, are to thank for having this impact possible on families around the world.
As we enter into fall, we are excited to share our newly redesigned Danny Did website: www.dannydid.org. We hope this resource lends tangible information and resources for families and adults about epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), and we encourage you to share the link with anyone that we may be able to assist. We are also proud to welcome a new Danny Did board member, Courtney Murphy. Courtney is a marketing executive who generously shares her time and talents to advance our cause, and we are grateful to have her. Be sure to read up on our Hearts & Hugs gala, Disney Day, and other upcoming events; your support makes them a success and brings epilepsy into the spotlight!
July 29, 2014
The loss of actress Skye McCole Bartusiak on July 19th is a recent reminder of the serious risks posed by seizures. While her death is still being investigated, her mother has shared that she was suffering seizures in the week before she died at age 21. Our thoughts go out to her family.
We strongly advocate for any means to enable early intervention for a person who is seizing. For those interested in the landscape of technology that is being created and used to monitor (and one day prevent) seizures, this new article in Nature International Weekly Journal of Science is a worthwhile read. Danny Did is proud to have a role in supporting two of the research projects cited. Engaging young people is essential towards achieving our mission to prevent deaths caused by seizures, and so we are excited about the creation of the Danny Did Foundation Young Professionals Board. This talented and dedicated group will host their first fundraiser on August 21st in Chicago, and all are invited.
March 19, 2014
Spring is dawning and the itch to get outdoors is extra strong this year. That might explain why Team Danny Did is active and growing across the country. In Los Angeles, Robert Mitchell and his seizure dog Boomer are training for the Shamrock Shuffle 8K. Learn more about their inspiring story in the column to the left. Kim Holderfield will represent Team Danny in the Boston Marathon in April, when she’ll take our message of SUDEP awareness through the streets on Patriot’s Day. And college student Jack Nugent continues his training for the Hoosier Half Marathon in Bloomington, Indiana, where he’ll run to raise funds in honor of his younger brother Will.
In the Chicago area, we’re inviting supporters to run with Team Danny in the 2014 Bank of America Chicago Marathon and the Danny’s Girls running program. More background on each effort is below. To round out the fitness theme, the National Walk for Epilepsy is this Saturday March 22nd in Washington, D.C. Danny Did is proud to support this event and will sponsor a Remembrance Banner to honor Danny and the many lives lost to epilepsy. If you’re planning to attend, you are invited to walk with Team SUDEP. Be sure to stop by the SUDEP informational booth to learn more about the leading cause of death in epilepsy. Earlier this month we had the chance to attend the Northwestern University Dance Marathon to thank 1,000 plus college students for the impact they have had on our cause over the past year. A new NUDM documentary captures the spirit and energy of what they do and how it all unfolded with Danny Did. Click here to watch.
February 20, 2014
A recent article in the Boston Globe tells the story of a family marking the one year anniversary of the SUDEP of their son, Eitan. This family was uninformed that seizures can be fatal, and the article lends mainstream exposure to the importance of doctor communication around SUDEP and other epilepsy-related risks. Please give it a read and share it with others if you can. We have moved our annual Evening of Hearts & Hugs Chicago fundraiser from the spring to the fall this year. Please save the date for Saturday October 25th! We are grateful to have our friends at Lundbeck as the Presenting Sponsor of the evening. As winter thaws and running season begins, we’re excited to have the Nugent family and students at Indiana University bringing Team Danny Did into the Hoosier Half Marathon in Bloomington, Indiana. If you’re ready to stretch your legs and hit the pavement for a cause, consider joining up for the Bank of America Shamrock Shuffle 8K (March 30th) or our Danny’s Girls running program (training starts April 3rd). We wish everyone at the Northwestern University Dance Marathon the best of luck for their 40th Annual Dance Marathon weekend on March 7-8. We are lucky to know the incredible impact these college students have!
January 15, 2014
As we head into the new year, we want to thank our dedicated board of directors for all that they do to advance our mission to prevent death caused by seizures. On January 4th we hit our four-year anniversary as a foundation, and many of our board members have served for that entire span. They share their time, talents and relationships to support Danny’s cause and families facing epilepsy, and for that we are much stronger. Several seizure-related deaths have occurred in the past month. Some victims have been young and some older, each was leading a bright life that was cut too short. We dedicate our work to them, work that is inspired by an urgency to prevent other families from the same outcome. We urge medical professionals to discuss all of the risks that come with epilepsy, including SUDEP, so that patients and families are well informed to pursue the best possible treatment plan. Our wish for you in this New Year is to enjoy each day, to embrace the simple things, and to be happy, like Danny did.
December 18, 2013
This time of year we give thanks for the gifts of family and friendship. As we enjoy this time, we remember Danny’s smile and love and how he embraced every moment. This past year, the Danny Did Foundation took each day as a personal challenge to advance our mission to prevent deaths caused by seizures. Our efforts moved forward with Danny and his family always in our hearts. A 2013 highlight was our partnership with the Northwestern University Dance Marathon and the amazing students and supporters of Northwestern University. NUDM provided an unforgettable experience: 30 non-stop hours of dancing, singing and advocating for epilepsy awareness. Northwestern students worked tirelessly to raise a record $1.2 million in Danny’s name, enabling the Danny Did Foundation to fund important research projects at Northwestern Memorial Hospital and Boston Children’s Hospital. Our gratitude to all involved will last forever. During 2013 we cheered 8 year-old Nick Curley as he championed his “100-Miles For Danny” ice-skating campaign, one selfless boy raising more than $40,000 and sparking recognition in the U.S. Congress. Nick’s big smile reminded us all that anything is possible. Thank you Nick and the Curley family for energizing our Foundation throughout the year.
Finally, this fall, Illinois Governor Pat Quinn signed into law Illinois Senate Bill 1226, a.k.a. the Danny Stanton SUDEP Act. We partnered with State Senator Dan Kotowski and Representative John D’Amico to create and pass this historic legislation. The law requires an inquiry about a history of epilepsy as part of a standard autopsy, and for coroners to report any instance of Sudden Unexpected Death in Epilepsy (SUDEP) to a national registry. With this advancement, Illinois becomes a national leader in its public policy approach to epilepsy. Danny’s Christmas gift to all of us is the reminder that time is precious. Enjoy each day with your family and friends this holiday season and throughout 2014. On behalf of Danny’s foundation, our Board of Directors, volunteers around the world, and our dedicated staff, thank you, and Happy Holidays to all.
November 13, 2013
November is National Epilepsy Awareness Month. Danny Did is teaming up with partners to spread awareness across several mediums, including this ad on ESPN Chicago radio; this ad in Neurology Today magazine; and these events happening throughout the month. Last week we were proud to be a partner of the first ever Epilepsy Awareness Day at Disneyland. Thank you to the Mitchell Family – our Danny Did Ambassadors in Southern California – and all who took part to place epilepsy into the spotlight at one of the world’s most renown venues. More than 900 people attended in support. Also this month, we had the opportunity to participate in the Student Leadership Conference at Regina High School in Wilmette, Illinois. We’re excited to announce two new research projects that enable leading medical professionals in Chicago and Boston to study epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). These efforts and the progress they spark are another piece of Danny’s legacy. If you’re in the area of Northern Virginia, visit www.events.org/newman5k for information on the 2nd Annual Joshua Newman Memorial 5K Walk & Run, which takes place on Saturday November 30th. Danny Did is the charity partner of this event. Also on the horizon is #GivingTuesday, a national day of giving on Tuesday December 3rd to kick off the holiday season. In honor of #GivingTuesday, please consider getting involved with Danny Did or making a tax-deductible year-end donation to support families facing epilepsy. P.S. As you start your holiday shopping, be sure to visit the Danny Did Gift Shop. You’ll find our official merchandise, as well as other items that benefit the DDF, like ‘Dibs Chicago’, the comical look into Chicago’s Wintertime phenomenon of parking spot saving.
October 17, 2013
This past Sunday was a special day. Danny’s spirit and love were present at the Chicago Marathon in hearts of his courageous mom Mariann, his aunts and uncles, and every runner who donned a Team Danny Did shirt as they ran 26.2 miles to raise awareness for epilepsy and SUDEP. We give thanks to this generous, resilient group. It is because of fundraising efforts like theirs that Danny Did has been able to help families spanning 42 states and four countries to access resources they need. Many of you are following University of Minnesota football coach Jerry Kill and his battle with epilepsy. As Coach Kill takes his temporary leave of absence, we stand with the Minnesota Athletic Director Norwood Teague and fellow epilepsy advocates in supporting coach 100 percent. No disease or disorder should prevent someone from the opportunity to pursue their dreams. You can email Mr. Teague to express support at email@example.com. On October 26th Danny Did will support the “Epilepsy Awareness Game” that matches Minnesota vs Nebraska. These large, mainstream events are critical in elevating the dialogue and concern surrounding epilepsy. As we approach National Epilepsy Awareness Month in November, we invite our Chicago area friends to join us in “A Toast to Danny” on November 5th at the Gale Street Inn; click here to register. Keep your ear out for our coming PSA on ESPN 1000 radio. We want to reach people through every available medium!
September 10, 2013
As schools started back around the country, Danny’s older brother John and sister Mary Grace remembered him on their first day. This time of year reminds us how much Danny loved to learn and make new friends. Several recent SUDEP tragedies are heartbreaking evidence of how high the stakes are, and how urgent progress is needed for epilepsy and SUDEP awareness, for medical research, and for access to alternative treatments like devices and technologies that can enable early intervention and reduce the risk of lost lives. Changing public policy to support families living with epilepsy can be as meaningful as research and services. We encourage you to support a recent call to action by the Epilepsy Foundation to ask the DEA to provide timely access to epilepsy treatments. You can Click Here to contact the DEA today and express the need for a transparent review process with a clear timeline that provides certainty to those living with epilepsy, while preserving safety and improving access to FDA approved therapies. Take action with us!
August 12, 2013
Today is a special day in the history of Danny’s foundation because the legislation that bears his name – the Danny Stanton SUDEP Act – will be signed into law by Illinois Governor Pat Quinn. The law requires an inquiry about a history of epilepsy as part of an autopsy, and that cases of SUDEP in Illinois be reported to a national registry so that critical data can be compiled. Illinois joins New Jersey as the first states to take this important action, and we are grateful to Dr. Orrin Devinsky, Illinois state Senator Dan Kotowski, Rep. John D’Amico and the support of many others in making it a reality. We hope that this model becomes the public policy standard in all 50 states. In case you missed it, CNN recently reported on the benefits of medical marijuana for some people who face seizures. As with any treatment alternative, families, parents and patients should investigate this treatment option specific to their own situation, and communicate with their doctor about the possible pros and cons. Becoming aware and educated is a key first step. As we hang on to our last drops of summer, the photo above shows Danny in his final baseball season. Danny loved to play baseball with his older brother John’s team. That season he was one of the big guys. His heart still beats on baseball fields everywhere inside of the kid that never gives up.
July 10, 2013
In recent months seizures have impacted public figures including actress Kelly Osbourne, business tycoon Teresa Heinz Kerry, NHL hockey player Jarrett Stoll of the LA Kings, and musician Michael ‘Lil Wayne’ Carter. The group serves as a cross section of society and lend a high profile reminder that 1 in 26 Americans will develop epilepsy over their lifetime. Theirs are the same seizures that impact our brothers and sisters, sons and daughters, and moms and dads. Each seizure is a blow to a family, and no demographic is spared. What can we do? We can continue to raise our collective voice and we can take tangible steps of action. Whatever effort you take will make a difference – holding a bake sale, wearing a t-shirt, teaching your kids about seizure safety, coming to an event. Each step equals awareness and progress. Another helpful step you can take is to refer a doctor. Effective communication with one’s doctor is a key factor to configuring the best treatment plan and being as educated as possible about epilepsy and its related risks. The DDF has teamed with a company called Human Practice to create a free platform for the epilepsy community on which to exchange recommendations for the medical professionals that care for our loved ones. If you’re free tonight at 7 pm Central Time, tune in to BlogTalk Radio when host Tonya Heathco welcomes Danny Did as a guest to her program to discuss SUDEP and the work of Danny’s foundation.
June 11, 2013
Thanks to the work of many, our 4th Annual Evening of Hearts & Hugs event was a success and drew its largest crowd ever. We appreciate all who attended to raise funds to enable our mission, with special thanks to writer and producer Mick Betancourt for serving as the event’s emcee. Awareness and understanding for epilepsy and SUDEP is critical in all its forms, especially those that reach the ‘mainstream’. Later this month on Saturday June 29th, our friend Kathy Loftus will sponsor a free day at Cosley Zoo in Wheaton, Illinois, in memory of her son Kyle, who died from SUDEP in November of last year. Kathy will share information on epilepsy, SUDEP & Danny Did, and all are welcome. We are grateful for her advocacy. Efforts like hers make a difference. For interested families, parents or people with epilepsy, tomorrow afternoon June 12th a webinar takes place titled “Preventing Sudden Unexpected Death in Epilepsy: Current Thinking and Strategies”. For details & to register, visit www.tinyurl.com/pamewebinar. Hosts Dr. Daniel Friedman and Dr. Dale Hesdorffer will discuss what health care professionals, people living with epilepsy and their families can do to help reduce the SUDEP risk, taking questions at the end. As the seasons turn, we have a full summer of events coming up, including our 4th Annual Danny Stanton Kickball Tournament (registration now open), multiple golf outings to benefit our cause, and a basketball clinic for kids with epilepsy. Check your schedule and join us if you can!
May 6, 2013
Each Spring, Danny’s grandma Stanton tends to a garden she planted in his honor, “Danny’s Garden”. It’s a symbol of rejuvenation and growth for her grandson to help combat another summer without him. It’s that combination of loss and hope that leads us into Spring and our upcoming annual fundraiser, An Evening of Hearts & Hugs. We’re grateful for two recent awareness-raising partners: the Zumbathon & Party hosted by the Ladies Ancient Order of Hibernians and Zumba instructors Diane Garvey and Regina Mundt; and Alpha Phi Omega at Northern Illinois University, who supported us through their annual Duck Race charity event. An update on our legislative efforts, Illinois Senate Bill 1226 passed unanimously through the Illinois Senate by a 52-0 vote. The proposed law requires an inquiry about a history of epilepsy or seizures during an autopsy; and if the cause of death is determined to be Sudden Unexpected Death in Epilepsy(SUDEP), it must be reported to a national SUDEP registry. This is a critical step toward researching & ultimately preventing the most common cause of death in Epilepsy. Special thanks to Senator Dan Kotowski, a Danny Did board member, for his leadership. The bill now heads to the House. We hope to have positive news next month.
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.