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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

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June 29, 2011

The Danny Did Foundation is an outstanding organization comprised of caring, thoughtful, forward-looking, and motivated folks that work tirelessly towards their goals:

(1) advancing awareness of Sudden Unexplained Death in Epilepsy (SUDEP) and enhancing the SUDEP communication model
between medical professionals and those afflicted by seizures, and (2) the mainstreaming of seizure detection and prediction devices as well as other technologies that may assist in preventing deaths caused by seizures)

Every decision they make, every interaction they have, every dollar they spend goes towards achieving their goals. Every time I talk to those associated with Danny Did or attend one of their events I feel compelled, motivated, and inspired to help in anyway possible. The DannyDid foundation does everything right and is making a significant positive impact.

The Great!

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

my interaction with the founders and the folks associated with the organization. I have seen first hand the profound difference they have made for families dealing with epilepsy. I have seen the education materials they have helped develop and the progress they have helped make in the medical community.

Ways to make it better...

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

Not change anything

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

My consistent interaction with the foundation and the work that I see them do day in and day out and the progress they are making. Every interaction with them inspires me to do more. I always walk away motivated to help others. Not many organizations can do that.

Why did you make your donation at this time?

I try to make donations once a quarter so that I can at least do some small part to help them continue to have a positive impact.

What would you tell others about this organization?

I would tell others that it is one of the best organizations that live true to their goals and put every dollar, hour, and resource towards accomplishing those goals.

When was your last experience with this nonprofit?

2011

June 29, 2011

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June 29, 2011

My 11 year old Son Brynnon suffers from Epilepsy and Borderline Intellectual Functioning. I stumbled upon Danny Did while doing research for my Son's outcome. I was horrified to learn about SUDEP, especially since none of the Physicians that we had seen had ever mentioned it to us. I was told over and over again that having a seizure while sleeping is not common and would not happen again after his first that we saw in early 2009. After learning about SUDEP from The Danny Did website I started staying up at night to watch him sleep. It was realized then that he was having an average of 3 Grand Mal Seizures a night and countless myoclonic seizures. I started sleeping with Brynnon and our infant on the sofa bed fearing that he would have a seizure and no one would be with him. I contacted Danny Did and spoke with Tom Stanton. I explained that we are a one income Home School Family and could not afford the EMFIT Seizure Monitor. He was very informative and said that they would like to send us one. My Son, My baby and I have been happily sleeping in our own beds since.

The Great!

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

Danny Did is a wonderful organization and so many have been educated about SUDEP and Epilepsy through them. I could never thank them enough for the help with our Son, at a time when we felt so helpless. They are tirelessly working to educate so many about SUDEP.

Ways to make it better...

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

Give them more funds!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

I found Danny Did while searching the web about my Sons condition.

What, if any, change in your life has this group encouraged?

Danny Did gave us peace of mind, knowing that we are doing all we can do to prevent SUDEP in our Son.

When was your last experience with this nonprofit?

2011

June 29, 2011

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June 29, 2011

I dont know where we would be without the Danny Did Foundation. Almost 2 years ago ym daughter was diagnosed with Epilepsy at the age of seven. During our hospital stay and since with her neurologists, we were never told of SUDEP. We had no clue such a real and scary thing existed. Thanks to the Danny Did Foundation we were able to get informed and they even went as far as helping us financially obtain (based on our financial need) an Emfit movement monitor so that we can be alarmed if she has seizures at night. For monthes after she was diagnosed I slept on her floor terrified that she would have a seizure at night without me knowing and since the Danny Did Foundation came into my life, I sleep so much better. Not only have they helped me out in the way in which I just explained but they have warmed ym heart and made me feel like a part of the family. They actually care about me and my daughter and do it all in the name of their sweet boy that they lost. I have recently volunteered for the Foundation, speaking at a local Epilepsy conference and getting the word out on their behalf. I hope to continue to do more volunteer work, it is the least I can do for such an amazing group of people!

The Great!

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

Obtaining an Emfit movement monitor and crucial information ahout my daughters disease.

Ways to make it better...

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

do nothing. Not only are they full of knowledge about SUDEP and Epilepsy and nto only did they help me with obtaining an Emfit movement monitor, they made me feel like a part of the family and made sure that my daughter was ok. They care so much for people and that is not something that can be taught.

June 29, 2011

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June 29, 2011

Our oldest son was diagnosed with a seizure disorder several years ago. We contacted Danny Did for more information for an Emfit device and received one within days. The device detects nocturnal seizures and does an amazing job. The prompt and positive experience is highly unusual but so greatly appreciated. The device has notified us 4 times of our sons seizures and possibly saved his life.

The Great!

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

This organization is extremely prompt and has a sense of urgency. They are organized and professional with a human touch.

Ways to make it better...

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

This organization is prompt and professional. It would be wonderful if all ogranizations could duplicate Danny Did.

June 29, 2011

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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...

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Ways to make it better...

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

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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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