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July 1, 2011

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July 1, 2011

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.

The Great!

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

outreach to families and doctors/medical professional. Public relations, fundraising and general counsel.

Ways to make it better...

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

Raise suffient funding to allow the Foundation members time to concentrate on ending deaths caused by seizures. This foundation is ready to explode with assistance for others and is really only one financial committment away from making even greater progress.

June 30, 2011

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June 30, 2011

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.

The Great!

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

Talking with families that are affected by seizures and referring them to DDF as a valuable resource.

Ways to make it better...

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

Continue to raise awareness of SUDEP.

June 30, 2011

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June 30, 2011

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.

The Great!

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

My son was having ticks and possilbe silent siezures. He went though a few days of testing. Test results came back negative but because of the Danny Did Foundation I asked a lot more questions and and had the test results double checked. As a new board member I am honored to be part of such a high energy group of people who are going to make a differnece in this world. The people behind the organization are extremly driven, motivated, and determined to make a difference.

Ways to make it better...

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

Enlist the help of more people to enhance our ability to spread the word and help others.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

How did you learn about this organization?

I know the founders personally

What is this organization's top short-term priority?

spread SUDEP Awareness

What is its top priority in the long run?

Prevent deaths caused by siezures

When was your last experience with this nonprofit?

2011

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