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May 6, 2012

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May 6, 2012

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.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 30, 2011

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June 30, 2011

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.

The Great!

I've personally experienced the results of this organization in...

Interacting with parents who's children have epilepsy or seizures and seeing the hope that the DDF gives them.

Ways to make it better...

If I had to make changes to this organization, I would...

Draw more of an international presence, which I'm sure they would like to do

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

June 30, 2011

more

June 30, 2011

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 Great!

I've personally experienced the results of this organization in...

The DDF has resulted in many new connections. There are connections of grieving w/ the Stanton family and other families who have lost a loved one to Sudden Unexpected Death in Epilepsy and there are connections of joy and celebration in putting into practice the words Mike wrote at the end of Danny’s death notice: “Please go and enjoy your life. Danny did.” The awareness and education piece has resulted in people learning about SUDEP who didn't know about it. Equipping and empowering people is HUGE.

Ways to make it better...

If I had to make changes to this organization, I would...

hmmm... I think that this organization is doing everything right! They have achieved incredible goals and accomplished amazing things in their short existence... just like Danny! The DDF is effecting change locally, nationally, and internationally with regard to SUDEP and Danny has inspired many to be grateful, to be loving, to enjoy life, and to give more hugs! This leaves me in a position of wondering how there would be anything "I had to" change in this organization. Thanks Danny! :)

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

What one change could this group make that would improve your volunteer experience?

At this point in time, my volunteer experience has all been good and I do not have any suggestions for ways the group could improve upon it.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Can any one have a volunteer experience without it having an effect on him/her? :) Volunteering with the organization has equipped me with educational materials to share with others. While being more comfortable addressing an individual or small group, I am becoming more confident in addressing larger groups now. In addition, I am now equipped with Danny's story. Since I have not personally dealt with the loss of my own child, Danny's story has become one of my connecting points when talking with others about SUDEP. Last but not least, my volunteer experience has made it possible for me to meet incredible & extraordinary people.

How did this volunteer experience make you feel?

Inspired. Creative. Energized. Valued. Welcomed. Connected. ♪ Whoa! I feel good, I knew that I would ♪ There is also a feeling of grief involved in walking alongside as a volunteer with this organization. "Whose cup is this? It is our cup, the cup of human suffering. For each of us our sorrows are deeply personal. For all of us our sorrows, too, are universal." ~ Henri J.M. Nouwen

When was your last experience with this nonprofit?

2011

June 30, 2011
1 person found this review helpful

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June 30, 2011
1 person found this review helpful

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.

The Great!

I've personally experienced the results of this organization in...

...acquiring a seizure detection device that alarms us when our daughter is having a seizure in her sleep. The DDF is trying to change the perception of epilepsy and help gain awareness of SUDEP and because of this, I am now volunteering at events and trying to raise awareness in Indiana.

Ways to make it better...

If I had to make changes to this organization, I would...

do all I could to help raise funds for the DDF to help make it easier to get the word out about epilepsy and SUDEP awareness.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

They have helped me WANT to raise awareness of epilepsy and SUDEP>

How did this volunteer experience make you feel?

It feels good to educate people and help others who might be affected by epilepsy.

When was your last experience with this nonprofit?

2011

June 29, 2011

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June 29, 2011

When Danny Stanton died of SUDEP, the Stanton's could not have known what an impact their little 4 year old boy would have on so many people. Being such an energetic, terrific kid, he was best friends with my nephew, Charlie. When we heard that Danny died that December morning, the sadness was overwhelming! Great kid, great family, great friends, How could this happen to them? Most of us assumed that Mike and Maryann would not be able to function after this tragedy. We hardly knew Danny, and we could not deal with his death. But, his parents persevered. Instead of climbing into bed and not coming out, they wanted to make it their mission raise awareness of SUDEP. During the time of their deepest sorrow, they were also thinking of others. My first reaction to Stanton's setting up the foundation was that of complete awe. How were they going to be able to do this? I hugged my kids extra tight for months, little things my own boys did made me cry, where were the Stantons getting this courage? But they have managed to take a complete tragedy and turn that around in honor of their son. They truly care about raising awareness of SUDEP and making sure that this doesn't happen to one more little boy or girl. Danny has become an angel. Through the DannyDid Foundation his message and love of life will protect our children.

The Great!

I've personally experienced the results of this organization in...

Countless people have asked me about DannyDid. We wear the pins, t-shirts & sweatshirts, people stop us & ask what it's about. The response is, "I know someone with Epilepsy". It gets the conversation going. We got our Cub Scout Pack involved in spreading the word. The information even raised awareness to one of our own families who has epilepsy in their family but, like the Stantons, never thought their child could die of Epilepsy.

Ways to make it better...

If I had to make changes to this organization, I would...

We are always thinking of how we can incorporate Danny's memory into our activities so that we can continue to spread the word and raise awareness in SUDEP.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

June 29, 2011

more

June 29, 2011

The Danny Did Foundation is a front runner in educating the medical community and those affected by epilepsy and seizures about Sudden Unexplained Death in Epilepsy (SUDEP.)

Danny Stanton, Mike and Mariann Stanton’s 4 year old son, passed away from SUDEP on Dec. 12, 2009. They made it
their mission to ensure that other families would not have to endure similar tragedy, and took action to establish this foundation almost immediately after loosing their precious Danny.

In the short time since they established the foundation they have made huge strides nationwide, and even worldwide. Danny Did Foundation has touched the lives of over 12,000 people via Facebook, have established a reputable Board of Directors – including a leading Doctor of Neurology, have purchased Emfit Monitors (a device that detects seizures when a loved one is in bed) for over 40 families, and have been the driving force behind ground-breaking clinical trials of the Emfit Movement Monitor at Rush University Medical Center, Northwestern University Comprehensive Epilepsy Center, and Children’s Memorial Hospital Epilepsy Center.

This organization is making a difference, and they are paving their own path. The Stanton Family, and the entire Danny Did Family, are driven by the enormous love for an amazing little boy named Danny Stanton..

www.dannydid.org

The Great!

I've personally experienced the results of this organization in...

I have been educated about SUDEP, and the products available to detect when an individual is having a seizure - particularly when they are sleeping.

Ways to make it better...

If I had to make changes to this organization, I would...

Raise more money to help make it more effective.

June 29, 2011

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June 29, 2011

I came about learning about Danny did through the epilepsy foundation of MN after we lost our 22 year old son to SUDEP. Their website is the place I have learned the most about seizures and unfortunately I already learned that a person can die from a seizure, in their sleep. The people at Dannydid are the most compassionate people I have spoken to and there determination and passion to get the awareness about SUDEP exceeds expectations so no other family has to go through what we did and what the Stantons have. I am hoping through Dannydid and what we are doing in MN we, together will find a solution so this never happens again. Patients need to be educated and know all what is out there to help with their seizures...not just mask it.

The Great!

I've personally experienced the results of this organization in...

na

Ways to make it better...

If I had to make changes to this organization, I would...

na

June 29, 2011

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June 29, 2011

I have been a volunteer for this organization from the beginning! As soon as this tradgedy happened The Stantons got to work not only to raise money to more importantly to raise awareness for SUPED. It was a term that I had never heard of! The first event was buzz cuts for danny it was an emotional day for everyone! This last year I again participated in the Buzzcuts for Danny and although emotional it was also an eye opener that this organization is doing big things! I also remember being at the first hearts and hugs benefit and realizing how many people have been effected by this tragedy and realizing how shocking it is that more people don't know that SUDEP exists! I hope The Danny Did Foundation is able to continue their journey to raise awareness! I am very blessed to be a part of this amazing group!

The Great!

I've personally experienced the results of this organization in...

my day to day contact wtih people. Before Danny died I know nothing of Sudep. Through the DannyDid Foundation I have learned what to do if somone is having a seizure. I have also learned to ask questions of my childrens dr. Just today I told a friend to join the DannyDid Marathon team and with min. there were 4 other people whom I have never met telling her the same thing and talking about what an amazing foundation it is!

Ways to make it better...

If I had to make changes to this organization, I would...

want them to get into more schools to help people realize that those with seizures are normal and should be trated as such.

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