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43 Reviews
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November 1, 2012

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November 1, 2012

My son was diagnosed with Dravet Syndrome back in 2002, with genetic verification in 2003. Sadly, my son is one of the Dravet Angels, and passed away from Sudden Unexplained Death in Epilepsy (SUDEP) back in June of 2008. He was 8 years old when he passed away. While SUDEP was my son's primary cause of death, Dravet Syndrome is listed on his death certificate as his secondary cause of death. Over the years, I have had the privilege of knowing the co-founders of the Dravet Syndrome Foundation (DSF) personally before they started the DSF, and after my son passed, I wanted to give back to the DSF by volunteering at their annual fundraiser. The DSF raises much needed research funds, as well as monies allocated for cooling vests, seizure dogs, iPads, and other items needed by Dravet Syndrome families in need. I look forward to volunteering at DSF events for years to come!

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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

November 1, 2012

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November 1, 2012

Our daughter Alexis was diagnosed with Dravet Syndrome in 2006. Until the Dravet Syndrome Foundation was formed there was no organization funding and directing research. The parents that formed DSF changed our lives. They gave us hope and a new purpose. We could continue to feel hopeless, or we could join their mission and help to change the future for our children. We have been fundraising for DSF for the past 3 years and it has brought so much optimism to our lives. We have great hope for Alexis, and all those that suffer with Dravet Syndrome. They have helped us feel part of a community that supports and cares for each other. The accomplishments of DSF are truely staggering. They have made enormous strides in funding and shaping the research, in increasing awareness, providing a support network for families and caregivers, and by supporting families in need with financial assistance. Hope gives us the strength to continue fighting this devastating seizure disorder.

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

November 1, 2012

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1 previous review
February 9, 2012

We received a grant from the Dravet Syndrome Foundation to purchase a seizure response dog for our son. The grant was offered within a few weeks and the check arrived to the organization with the sei... more

November 1, 2012

I have a 4 year old son, who was diagnosed with Dravet Syndrome when he was 13 months old. We where put in contact with the Dravet Syndrome Foundation and they have been an amazing part of a rough journey. The DSF has provided information when we had no idea where to start and support and encouragement when we so desperately needed it. We have received grants for a cooling vest and a seizure response dog for our son from the Dravet Syndrome Foundation. I appreciate all that they do so much, that i wanted to find a way to help. I volunteer once a year to help raise funds and awareness through the DSF by hosting a walk. Even as a volunteer, the support and encouragement is amazing. I would not be able to do it without their help.

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

February 9, 2012

We received a grant from the Dravet Syndrome Foundation to purchase a seizure response dog for our son. The grant was offered within a few weeks and the check arrived to the organization with the seizure response dog within a few days. It was a very easy and uncomplicated process. Thank you so much!

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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

When was your last experience with this nonprofit?

2011

November 1, 2012

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November 1, 2012

My husband and I have been a part of Dravet Syndrome Foundation since the beginning stages of growth. We are beyond impressed with their strong leadership, passion and hard-working board members. DSF has worked hard in raising awareness and funds for our children “in hoping” to find a cure or even comfort in their lives. Our son was rewarded a stroller a few years ago, to receive such an amazing gift for our son was incredible. The board members never stop working and always go beyond to reach out to each family in need and even new families who are just finding out about the Dravet Syndrome world. DSF has an honest approach about what Dravet Syndrome is and always try to find a way to help families through their daily struggles. My husband and I are very proud to be an apart of such an amazing organization.

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

September 26, 2012

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Review from Guidestar
September 26, 2012

I am a mother of a 3 year old little girl that has Dravet. In her three years of life we have experienced many lows and some highs. I came across the Dravet Syndrome Foundation, which was for in depth in the amount of information supplied. I was able to connect with other parents that understood what I was experiencing and read other stories of similar kids. I came across an application for grant that Dravet Syndrome Foundation had and decided to apply for our daughter because she lacks verbal communication. I was recently contacted by one of the director and I was informed that they would be providing our daughter with an Ipad. That was not the biggest surprise of all. I was able to speak with the directors son who also has Dravet and following that conversation with him I felt very hopeful of the possible future for our daughter. I am very grateful for the Dravet Syndrome Foundation and all of the assistance they have provided to us.

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

Life-changing

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

Likely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

September 18, 2012

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Review from Guidestar
September 18, 2012

Hello Everyone, I am on top of the world today because I just received notice that my adorable 7 year old son Matthew is receiving an IPad from the Dravet Syndrom Foundation. I requested an IPad a while back when the Dravet Syndrome Foundation received a donation. The IPad's went so quickly but I was told that I would be placed on a list in case more donations were available. I am so happy that they came through in flying colors. This device will change the quality of life for Matthew and our family. We will be able to go out to restaurants, homes of friends, special events and places that would usually cause him to get extremely restless after a short time. What a great organization that does such heartfelt work for children and families of Dravet Syndrome. Thank you .... Matthew's Mom :~)

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

When was your last experience with this nonprofit?

2012

May 2, 2012

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May 2, 2012



I am a volunteer for the Dravet Syndrome Foundation.  Since the first time I read their website I wanted to volunteer.  First because I was very impressed with how hard they work raising money for research.  That gives us as parents with a child with Dravet Syndrome, hope that our kids
will have better treatments.  I am very impressed with how while raising the funds they also work very hard to support and help the Dravet comunity in a way only family would do it.  They also help families by providing assistive devices and services to children who otherwise wouldn't be able to afford.  I felt very welcomed since my first e-mail contact with them.  I am very proud to be a volunteer and I wished I had more time to be more involved with such a great Organization, very professionally ran and that makes sure that the funds go to the most promising research projects that one day may find a cure to this devastating disease.

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

May 2, 2012

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May 2, 2012

My son was diagnosed at 6months with Dravet. II went online and found the foundations website! As a rare syndrome while my son was having a prolonged seizure I was just reading which medications not to administer from the Dsf website. I was desperate and Lori., the president called me back after I sent her an email, she gave me hope with her words and the warning of this horrible syndrome! the foundation has been like a family through their support group. They share my hopes, laughter and cries! The staff is working hard on research and just pray one day there is a cute for this. DSF has just granted my son with a cooling vest and an IPad we use during his therapy. I am extremely grateful to the foundation and staff for working hard on research and although they face the same problems all dravet parents do, they make theirselves available to lend a crying shoulder and give support! I will always be thankful to DSF for all the work they do and trying so hard on finding a cure,

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?

2012

May 2, 2012

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May 2, 2012

I am a volunteer for the Dravet Syndrome Foundation. I am so impressed with the way this organization is run, and with their Board and staff. They give all of their time to help find a cure for this rare disease. I am happy to be a part of it in any way.

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?

2012

May 1, 2012

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May 1, 2012

My name is Karen Walters and my son Zane has benefited from the Dravet Syndrome foundation because, they have answered questions as to where I can go to gather information about this syndrome and various websites where I can chat with families too share my experience. Zane began having seizures at 4 months old, now he is 2 yrs old and I am trying the Ketogenic Diet. The diet as decreased his seizures and he is doing a lot better. The Dravet Syndrome Foundation is so wonderful they have given Zane a wonderful I pad to a assist in his learning and a Cooling Vest to maintain his body temperature. Thank you

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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

When was your last experience with this nonprofit?

2012

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