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December 9, 2013

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1 previous review
April 18, 2012

As a parent of a child with Dravet Syndrome, Dravet Syndrome Foundation gives us hope that research into Dravet Syndrome is a priority. The foundation also gives us a support network as well as provid... more

December 9, 2013

Dravet syndrome Foundation is a hugely professional charity, with an incredibly knowledgeable and dedicated board. They support families internationally - families such as ours, by helping with an adaptive stroller, which has made a huge difference to us.
They also give us hope for the future
with their impressive research programme. Thank you

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?

2013

April 18, 2012

As a parent of a child with Dravet Syndrome, Dravet Syndrome Foundation gives us hope that research into Dravet Syndrome is a priority. The foundation also gives us a support network as well as providing equipment which makes an enormous difference to the individual which then has a positive effect on the whole family - For us, our daughter was granted an iPad. The whole process was made very easy for us (which also makes a huge difference in our life) and we had a very quick and personal response. The iPad has made a huge difference to my daughter and I would like to thank Dravet Syndrome Foundation for this and the hope that they give us.

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

November 26, 2013

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Review from Guidestar
1 previous review
September 24, 2012

The Dravet Syndrome Foundation has been truely AMAZING to us. Our 4 yr old son Miles was awarded both a cooling vest and an IPad by the foundation. These are life changing expgifts that we would not h... more

November 26, 2013

The Dravet Syndrome Foundation is an amazing organization that has changed our lives for the better. Our son Miles is 5 yrs old and suffers from Dravet Syndrome. The Dravet Syndrome Foundation recently awarded Miles an Adaptive Stroller. This is something that our insurance had denied and we had not been able to afford ourselves. As Miles has gotten older and outgrown a regular stroller our entire family has suffered as we have not been able to enjoy anything that involved long walks, the outdoors etc... Miles tires easily and can have a seizure at any time. We used to enjoy museums, the local zoo, even walks around our neighborhood but now that Miles is 85 lbs I can no longer carry him long distances and this puts him in great danger if we were to get more than a block away from home and he were to have a seizure. With the award of this adaptive stroller we can now enjoy all of those things again :) I can now feel safe in taking him out and know that if he does have a seizure he is strapped in and I can get him home safely. Our entire family is forever grateful to The Dravet Syndrome Foundation... they have given us our freedom back :)

Ways to make it better...

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

None

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?

2013

September 24, 2012

The Dravet Syndrome Foundation has been truely AMAZING to us. Our 4 yr old son Miles was awarded both a cooling vest and an IPad by the foundation. These are life changing expgifts that we would not have been able to obtain had it not been for THe Drravet Syndrome Foundation. On good days when Miles can go outside his cooling vest helps to keep his tempture regulated so that he can play for more that 5 mins at a time. On the bad days when he cannot go outside the IPad provides education and entertainment. Miles has SEVERE visual sensitivities to lights/patterns which make travel, doctors appointments, haircuts, shopping etc...extremley difficult. The IPad has given him something to focus on so that we can avoid additional visual and sensory triggered seizures. Slowly we are gaining some control in our life. We are eternally greatful for the help the DSF had provided. Thank you! Thank you! Thank you!!!

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

November 25, 2013

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Review from Guidestar
November 25, 2013

My daughter Anna (8 yrs) was diagnosed with Dravet Syndrome at 10 months of age. Anna is significantly delayed globally with daily seizures. We enjoy being outdoors and are an extremely busy family.
Traveling with Anna with her personal belongings as well as her medical equipment
have
made it difficult at times, leaving us with the feeling that just staying home is easier and less stressful.
We have been granted the gift of an adaptive stroller for Anna through the Dravet Foundation.
I cannot tell you how grateful we our for this gift of freedom for Anna. To be able to pack her up with her belongings knowing she will be comfortable and safe should she have a seizure is so comforting.
This foundation has helped so many families and brings happiness when we need it the most!
Thank you,
Wendy Conte


Ways to make it better...

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

No changes needed at all!

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?

2013

November 23, 2013

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Review from Guidestar
November 23, 2013

as a parent of a Dravet child with limited resource and an incredible amount of "needs". My son was fortunate to benefit from a patient assistance grant to recieve a jogging stroller. The process was easy and I sincerely appreciate the efforts of this foundation!

More feedback...

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

A lot

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?

2013

April 4, 2013

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Review from Guidestar
April 4, 2013

Our daughter Emalyne had her first seizure when she was 3 months old. After months and months of wondering we finally received her diagnosis of Dravet syndrome right before her first birthday. This organization is amazing. They are doing research and they offer hope, help, and guidance in all aspects of our little girls life, and the many lives of other children effected by this syndrome. Thank You for all you do! Jeffery & Michele Wolfe

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?

2013

January 8, 2013

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Review from Guidestar
January 8, 2013

I have a 16 yr old son with Dravet Syndrome who was blessed to receive an IPad2 through the DSF Patient Assistance Grant Program. In the past I have seen DSF offer other medically necessary items like cooling vests through the same program. I think it is incredible that such an organization is devoted to not only raising money for research, but also provinding support to the families. Thank you DSF for all the wonderful things you do!

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

December 21, 2012

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December 21, 2012

Our daughter Isabella Grace Wilson was diagnosed with Dravet syndrome at the age of three. Due to prolonged seizures Isabella lost over 50% of her brain causing major delays in all areas. At school her Occupational Therapist worked with Isabella with an Ipad. She demonstrated for us, our daughter’s ability to learn and communicate using one. Isabella’s teacher and OT encouraged us to try to purchase an Ipad for home. We are very thankful for the Dravet Syndrome Foundation, as Isabella was a beneficiary of an IPad2, and she uses it daily at both school and home. DSF is an excellent foundation that has provided helpful and caring information on the disease of Dravet Syndrome and has provided invaluable tools for those who are in need. Thank you DSF!

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

December 4, 2012

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December 4, 2012

My daughter, Amanda, was the recipient of an iPad2 from the special session offered by the DSF Patient Assistance Grant Program. The process for applying for the grant through the Patient Assistance Grant Program was a very user friendly and efficient. Amanda began having seizures at 4 months of age and at age 10 was diagnosed with Dravet Syndrome. Amanda has been using an iPad at school and has shown an increase in classroom participation and communication. We are very excited to have to opportunity to utilize the iPad to continue to increase her skills and make it easier for her to be consistent with her skills across environments, which she struggles with. DSF has and continues to be a great source for information and assistance by providing resources, research and increasing awareness of Dravet Syndrome and related epilepsies. Thank You!!

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

November 26, 2012

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Review from Guidestar
November 26, 2012

My son Xavier was picked to receive an iPad. It has been such a blessing. He is happier and learns better with it! With the financial hardship of being a single parent/caregiver I would have never been able to provide it for him. So thank you DSF for making the impossible possible. We appreciate you and everyone who contributes to the organization! Happy 13th bday Xavier!

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

September 26, 2012

more

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.

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?

Likely

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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