The Danny Did Foundation is aggressively spreading knowledge about SUDEP. Even within the Epilepsy community, too few people knew that epilepsy could kill. I have donated personally, referred people, and now am spearheading a fundraiser - I have increased my level of involvement because their mission is clear, their goals and activities are transparent, and they already have a track record of success. This is how a grass roots non-profit should work - making a big difference in a very tangible way right from the start.
The Danny Did Foundation is an amazing organization that has made great progress in helping those suffering from epilepsy. I have learned so much from them, not only about epilepsy, but on the strength of the human spirit. I have volunteered with them in the past and will continue to do so for many years to come.
The Danny Did Foundation is a professionally run organization. The Foundation is pro-active in seeking support and finding ways to help families and patients of epilepsy. Ending deaths caused by seizure requires movement and forward thinking -- all shown by this foundation. The Foundation made an immediate impact by donating movement monitors to families in need. Today, more than 40 monitors have been distributed to families around the world and our impact in the medical world continues to grow.
I was looking for help to get my granddaughter a movement moniter for her bed as she has seizures at night. The moniters are too costly for us to be able to buy one outright and The Dannydid foundation purchased one for her and had it shipped to us at no cost to us. They have truley been a blessing.
The Danny Did Foundation has made such incredible strides since it's inception a short 18 months ago. They have done an incredible job of spreading awareness of the dangers of SUDEP and epilepsy, which takes more lives than breast cancer(a grave fact I did not know prior). Moreover, they aggressively put awareness into action via a number of channels, most notably by initiating studies at several well renowned hospitals and donating seizure detection devices to families all over the US. This is an extremely important cause, and it is one I am very proud to be a part of.
I fell in love with Danny on Facebook! It's true--I first learned about the Danny Did Foundation on Facebook about a year and a half ago. It was shortly after Mike and Mariann Stanton started the foundation and corresponding Facebook page. His smile and personality came across loud and clear (from their Chicago location all the way to my home in California) in photos his family posted! Danny captivated me! His family let us all get to know him through photos with descriptive text. It didn't take long to fall in love with the whole Stanton family and witness their love for each other, their family, their neighborhood, and so on.
I have a 23 yr. old son with epilepsy--his first seizure was when he was 2 1/2 years old. My son was so much like Danny when he was in his preschool years--exuberant, athletic, eager to learn, always smiling, joking, laughing, and with hugs and love for everyone! I felt an instant connection because of our boys.
I have stayed pretty involved in different epilepsy communities online--wanting to reach out with encouragement and support to others, since we have a lot of experience under our belts living with a child with epilepsy. I say WE because living with epilepsy, does not just refer to the individual who has the diagnosis, it affects the whole family and friends too. I research and read a lot to try to stay ahead of the game--but epilepsy is still a mystery in so many ways...making it difficult to navigate and leaving many feeling frustrated and alone. Taking our story, our experience, what I've learned along the way--and giving back to others or coming alongside others is something I really enjoy doing. When I'm able to tell a parent of a child newly diagnosed with epilepsy-- "You aren't alone" "I've been in your shoes" "How can I help?" "I'm here to listen"--it empowers them and offers a lifeline in the midst of what can sometimes be a frightening, confusing, and isolating experience. There is one experience that I lack and can not say I have in common with people when they encounter it while dealing with epilepsy in their lives. There is one experience I haven't had that Mike and Mariann have--their son Danny died from SUDEP.
Sudden Unexplained (or Unexpected) Death in Epilepsy. Mike and Mariann's son Danny died from it. It wasn't my son... but I know it could have been. It could have been any one of the 3 million Americans affected by epilepsy or of the 50 million worldwide. The Stanton Family started, and are leading, the Danny Did Foundation with COURAGE, PASSION, and DEDICATION. The DDF is dedicated in its mission to prevent deaths (like Danny's) caused by seizures. I have chosen to support the Stanton family and the Danny Did Foundation because I believe in their mission, in their goals, in the fire and fight they carry in their hearts and in their heads, and finally because I believe in their boy--just like I believe in mine.
I wanted to spread Danny's smile, his story, and awareness of the Danny Did Foundation in Southern California. My initial contact to the Foundation was via email with DDF Executive Director Tom Stanton (aka Danny's uncle). I requested DDF silicone bracelets and SUDEP/Seizure Safety brochures to distribute at the Epilepsy Foundation Walk in Los Angeles where my son was captaining a team and our family and friends were walking together. The communication was encouraging and supportive. With approval from his family and the foundation, Danny was an "Honorary Hero"on our team. We stayed in touch with the DDF, and got to know another vital person to the Foundation--Mary Duffy, Chief Operating Officer. Mary is a neighbor of the Stanton Family--their kids all good buddies. Do you see a pattern of community in this Foundation? It's incredible!
One thing that I find attractive and appreciate about the Danny Did Foundation is their intergenerational intention in their goals, actions, and appeal. They recently sponsored an essay contest with a $1000 scholarship award encouraging eighth grade students in Chicago to address in their essays 1) The importance of helping non-profit foundations and 2) A projection of how to best introduce and incorporate the Danny Did Foundation into the high school experience. They awarded the winner in June at the DDF Hearts & Hugs event. Another great move?...The Danny Did Foundation has a Kids' Liaison! Mary Grace Stanton (Danny's sister) fills that role, and she's involved other kids by inviting them to complete and submit "Get Seizure Smart" quizzes. In return, she sends them a Danny Did bracelet. The Danny Did Foundation holds regular events--which appeal to children and adults.
The Danny Did Foundation has a definite presence in their local community and beyond. They have a knack for bringing people together...a diverse group of people united by Danny and a desire to prevent deaths caused by seizures.
I really can't express in this space all that there is to be said about the Danny Did Foundation. You'll need to go check out the Danny Did Foundation website at www.dannydid.org to explore and experience it for yourself. While you are there, be sure to check out the testimonies of what people are saying about the Danny Did Foundation. Oh, and you can leave a "Hey Danny," message on the home page.
The Danny Did Foundation has been instrumental in helping my family gain valuable information for our five year old daughter who has epilepsy. They have helped direct us to a company who makes a seizure detection device as well well as enabled us to open the lines of communication with our doctors regarding epilepsy and SUDEP (Sudden Unexplained Death in Epilepsy). We are now working with the DDF to help our state epilepsy foundation give information packets to the treating physicians who can then pass the information along to patients.
Almost one year ago, I heard Mike Stanton share the story of his son, Danny, who died tragically from epilepsy. Mr. Stanton then went on to explain how this awful event led to the creation of The Danny Did Foundation, which seeks to raise awareness of epilepsy, S.U.D.E.P., and ways to monitor for nighttime seizures. After the speech, I told Mike Stanton about my own daughter, Lily, who also suffered from epilepsy, and The Danny Did Foundation donated an Emfit, a device that monitors for nighttime seizures. The Danny Did Foundation did not want Lily to suffer as Danny did. Now, it's almost as if Danny is watching over Lily each night as she sleeps.
The DDF has opened my eyes to a huge issue affecting thousands of people that have seizures. Its website provides a number of powerful and compelling personal testimonials from parents that highlight the lack of information provided by doctors. I learned that doctors are not advising seizure patients that a seizure can result in death. DDF has been working tirelessly to raise awareness on this issue by reaching families affected by seizures and sharing, firsthand, the harsh reality of seizures. The Foundation has also identified a new technology, the Emfit monitor. This monitor sounds an alarm when a person experiences a seizure while sleeping. It is heart wrenching that this alarm isn't prescribed to every patient that has experienced a seizure while sleeping. You have to applaud the Foundation for purchasing almost 50 Emfit monitors over the last year for families that are affected by seizures. The DDF website is filled with notes thanking the Foundation for informing them about Sudden Unexplained Death in Epilepsy and the Emfit monitor. The Foundation is doing what we hope will one day will be done by every doctor; inform seizure patients that death can result from seizures and prescribe a seizure monitor to help prevent these tradgedies.
I was recently added as a new board member following my involvement with the organization over the past 18 months. The Danny Did Foundation is a newly formed oganization whose mission is to help spread the word about SUDEP and help prevent deaths caused by siezures. I became involved because my friend lost her 4 year old child to SUDEP. Although the loss of Danny certainly hit close to home, I also realized this could have happened to anyone. As a mother, my friend did everything Danny's doctors asked. The problem is that they knew more than they shared with her. Many of us know others who deal with seizures. I know a number of people including my nephew, a co-worker and another friends son. Since I have been involved with DDF, I have heard many personal stories about their experiencs with seizures. It is significantly more common that I ever realized. Do you know that more people die from SUDEP than from breast Cancer? We need awareness and understanding. We need doctors speaking openly and candidly about SUDEP. We need devices to monitor seizures. DANNY DID is helping to accomplish all of these things. I am proud to serve as a board member for this organization! The people behind the foundation are extremly motivated, dedicated and are people who will make things happen. I wish I could give people back the loved ones that were taken by SUDEP. Since that's not posible, I plan to spread the message of The Danny Did Foundation to the best of my abilites with the hope that we can help others.