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April 23, 2012

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April 23, 2012

My son has Dravet Syndrome & I cannot say enough about this foundation. DSF has accomplished so much in the few years since it's establishment. They have helped create research grants & projects in such short time it blows my mind. Dravet Syndrome is devastating disease without much hope or understanding when you 1st get a diagnosis then you find a dedicated group like this & they show you yes if you work hard & fight you can make a difference.

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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?

2012

February 16, 2012

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February 16, 2012

The DSF is a wonderful foundation. It has truley changed so many lives. My son Carter suffers from Dravet Syndrome and we were fortunate enough to recieve an Adaptive Stroller and Seizure Alarm for him through the DSF Grant program. I truley dont know where I would be without the support they offer!

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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?

2012

April 25, 2011

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April 25, 2011

The Dravet Syndrome Foundation has been incredibly valuable for my family. It has afforded my husband and me hope for our son in the face of this devastating syndrome by funding research, and providing us with a social support system of other parents of Dravet kids. Because Dravet Syndrome is rare, ongoing research for treatments and cures requires that the DSF be able to continue it's amazing work raising funds and educating caregivers, the medical community, and the public about Dravet Syndrome. It has also raised money for patient assistance grants for those unable to afford certain pieces of equipment necessary for living a safer and more fulfilling life.

The Great!

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

My son Jude, who has Dravet Syndrome, has been benefited by DSF because it has helped educate our family and friends about his condition. This has improved not only Jude's quality of life, but my husband's and mine as well.

Ways to make it better...

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

I honestly cannot say I would make any changes, this foundation does an outstanding job.

April 25, 2011

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April 25, 2011

My role with the Dravet Syndrome is multifacted, and because of this I have had the opportunity to see every aspect of the organization.
I am a board member, donor, and a parent of a Dravet child. I utimately would like to volunteer more.
The DSF is a powerhouse organization in the realm
of fundraising. We observed this fact at Ciara's Butterfly Bash on March 26, 2011. All the proceeds go to research toward a cure.
Lori O'Driscoll, one of the founders of the DSF, came down to our son Liam's first Special Education meeting, and explained what Dravet Syndrome is, and how the syndrome effects every aspect of daily life.The response was heartfelt, and as a result, Liam has had a very sucessful year.
Lori also got us the best medical care for Liam, and we are grateful .
The DSF is an organization that is highly effective. Lori O'Driscoll, Amanda Renz, and Mary Anne Meskis are motivated to educate, raise funds, and support families that have to deal with the devastating effects of this catastrohic form of epilepsy.

The Great!

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

I feel supported by the DSF. Having a child with Dravet Syndrome can be very isolating. Being part of the DSF family has given me hope because of the funding toward a cure, and a sense of community.

Ways to make it better...

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

I wish I lived closer to the DSF headquarters so I could do more!!!!!

April 25, 2011

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April 25, 2011

This organization has done so much to get funds for research, their fundraiser get better every year and more and more people are educated ,thru the fundraiser, on how devastating this syndrome is. We must every day work towards finding a cure and support the families, not in monetary means but most of all with the hope that one day there will be a cure

The Great!

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

I have helped in getting items for the silent auction

Ways to make it better...

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

get more people involved

April 24, 2011

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April 24, 2011

I am a parent of a child with Dravet Syndrome. Words cannot express my gratitude for what the DSF is doing. Most inspiring is that it is run by parents within the Dravet community. Thank you, DSF, for all you have done and continue to do!!!

The Great!

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

Assistance for a child with Dravet Syndrome.

Ways to make it better...

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

None.

April 23, 2011

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Review from Guidestar
April 23, 2011

The Dravet Syndrome Foundation was formed by parents who wanted to see aggressive research being done in the field of Dravet syndrome that would impact their loved ones and other afflicted with this disease. Although science might not move as quickly as we as parents would like, we want to assure that lack of funding is not what is slowing it down.

We have awarded more grants for research specific to Dravet syndrome and related epilepsies in the U.S. than any other non-profit organization. In less than 2 years since our inception, we have awarded over $625,000 in research grants. We are a volunteer-led organization with no paid employees and little overhead. We pride ourselves on maintaining operating expenses at a minimum to ensure that the gift of every donor truly brings us one step closer to a cure.

We focus our efforts in 4 areas, per our mission: Research Grants, International Ion Channel Epilepsy Patient Registry, International Patient Assistance Grants, and our Annual Research Roundtable for professionals with an interest in Dravet syndrome and related epilepsies.

The Great!

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

the hope we give to families that there will be better treatments and a cure! We have been contacted by many families who have joined us in our fundraising efforts and who appreciate that we are focusing our energies on funding syndrome-specific research that will help their loved ones. This is a devastating disease and we are proud to be raising hope through research.

Ways to make it better...

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

We are striving every day to come up with better ideas for fundraising and raising additional research dollars through grants and sponsorships. There is nothing I would change about the organization at this time, except to encourage more people to volunteer and join us in changing the outcome of Dravet syndrome. We have come remarkably far in our short history, thanks to our many dedicated volunteers and our Scientific Advisory Board.

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