Tag Archives: Dravet Syndrome

We Only Have 2 Weeks Left To Vote For Dravet Syndrome

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Thank you to everyone who is voting for The Dravet Syndrome Foundation, and for all of the other rare childhood diseases in the Vivint Gives Back Project on Facebook. I doubt the Dravet Syndrome Foundation is actually going to win but as of right now we are number 12 overall and number 7 in the region with 33,218 votes. I think what we have achieved is a much bigger awareness of Dravet Syndrome which is an important step toward a cure. We have also managed to raise $2,720 in donations which are matched by Vivint.

I would like to also tell everyone that as of this week my daughter Zoe is no longer on any type of seizure medication. We are controlling her seizures with just the ketogenic diet. So far we have noticed an amazing improvement in her energy levels and vocabulary since weaning her from the medication, she also seems much happier. Zoe has not had a seizure in over 7 weeks now, 8 weeks is the record since we started the ketogenic diet.

Once again here is the link to vote for the Dravet Syndrome Foundation:

http://www.vivint.com/givesbackproject/charity/45

Remember everyone can vote once everyday until August 27th.

Please Vote To Help Find A Cure For Dravet Syndrome

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Zoe Texting Again
Zoe On Easter Of 2009

I would like to introduce everybody to my 4-year-old daughter Zoe. Zoe has had seizures since she was 4 months old. In January of 2010 she was diagnosed with a rare neurological condition called Dravet Syndrome. Dravet Syndrome, which is also called Severe Myoclonic Epilepsy of Infancy (SMEI), is a very severe form of epilepsy.  It appears during the first year of life. The first seizures usually occur with fever and are generalized tonic-clonic (grand mal) or unilateral (one-sided) convulsions.  These seizures are often prolonged and may lead to status epilepticus, a life threatening condition where the brain is in a state of persistent seizure. Currently there is no cure for Dravet Syndrome, and the treatment options are very limited. Children with Dravet Syndrome usually experience poor development of language and motor skills, hyperactivity, and symptoms associated with Autism such as difficulties relating to others. They also have an increased risk for accidents, infection, and Sudden Unexplained Death in Epilepsy (SUDEP).

Zoe and I have a huge, EASY favor to ask you. A few months ago I was made aware of an exciting research project that could change Zoe’s life. It is being led by a doctor whose grandchild has Dravet. The goal is to try to “fix” the genetic mutation that causes the condition. The Dravet Foundation is trying to raise funds for this project. You can help. I am not asking you to donate any money. I am asking for your time – less than a minute a day for the next 75 days.

Zoe In The Hospital Getting An EEG
Zoe In The Hospital Getting An EEG

Please follow this link:

http://www.vivint.com/givesbackproject/charity/45

You have to have a Facebook account, so if you don’t have one, please create one (plus one for your spouse, children, dog, etc.) and please vote everyday. For those of you who hate Facebook, I understand – cancel your account in September. This could make a lifetime of difference for so many remarkable children and could mean $250,000 for research. Please ask everyone that you know to vote. EVERYDAY!

If we win, this is where the money will go. They are also fast-tracking the research so the drug trials could begin in 5 years which is amazing.

http://finance.yahoo.com/news/OPKO-Health-Announces-Grant-bw-340473083.html?x=0&.v=1

Let me know if you need any more information. Also please pass this on to everyone you know. Anyone can vote as long as you have a Facebook account.

Thank you, Stan