ICE 20/20 Fundraiser

Hope abounds for our children who are affected by Dravet Syndrome.  CURNA Pharmaceuticals recently contacted ICE Founder Michelle Welborn about a novel compound that has been engineered specifically to correct an SCN1A mutation.  Read more about CURNA at www.CURNA.com

ICE WILL AWARD A $60,000 GRANT TO DR. ANDREW ESCAYG OF EMORY UNIVERSITY FOR HIS PROOF OF CONCEPT RESEARCH IN CURNA’S ANTISENSE COMPOUND THAT HAS SHOWN PROMISE AS A TREATMENT FOR DRAVET SYNDROME.

CURNA Pharmaceuticals  has identified an antisense drug to the SCN1a gene.  The drug has shown to increase mRNA expression in a human fibroblast affected by an SCN1A mutation with confirmed Dravet syndrome.  ICE will fund Dr. Escayg’s proof of concept research in his Dravet mouse model to see if the drug will stop the seizures and other components of the syndrome.  If this drug is effective in treating or stopping the seizures and associated co-morbidities of Dravet syndrome in the Dravet mouse, additional studies will be needed to understand the safety, dosing range, and efficacy of the drug in mice and another animal such as a monkey.    ICE is committed to continue funding to the extent we are able as  the project progresses.  This research is a new technology for medicine and represents a new technology for medicine that will hopefully treat or cure many diseases caused by a gene mutation similar to the SCN1A mutation in Dravet syndrome, known as a haploinsufficient mutation.  This compoun is the closest we has ever gotten towards our ultimate goal of a cure for Dravet sydrome, and ICE is happy to partner with CURNA and Dr. Andrew Escayg on this exciting research!  Please view this video clip from Dr. Jeff Noebels of Baylor University regarding what is likely to happen should a drug such as CURNA’s compound prove to be safe and effective in humans.

To make this successful, we need your help. You can be a part of this groundbreaking research that provides us Hope during the Holidays.  Here is how you can help:

1)  Submit a tax deductable donation for this research online at www.ice-epilepsy.org OR mail with bottom half of the attached pledge card to : ICE, PO Box 365, Lewisville, NC  27023.  If you would like the donation to honor or remember a child, please click the blue + symbol under “ICE Epilepsy Alliance”.  This allows you to “add special instructions to the seller”.  Please enter the child’s name in this box.   If your employer matches donations, please e-mail the employer match form to info@icepilepsy.org or mail to the PO Box provided for processing.

2)  Participate in ICE 20/20 by asking at least 20 friends or family members to donate  $20 or as much as they can afford to this cause.  Social media fundraising through e-mail, Facebook, or Twitter is a great way to spread the financial investment in a cure by making many people philanthropists.  For friends and family who prefer mailing a check, you may wish to print out the attached flyer and pledge form.

3)  If you would like to fundraise through local businesses or host a fundraiser such as a Walk or Gala in your hometown, or if you would like to set up a webpage for your child through the ICE website to update friends and family on your child’s condition and progress and to help raise awareness and research money, please let use know by sending an e-mail to info@icepilepsy.org. Please see www.ice-epilepsy.org/lilly for an example of what you can do with your own webpage.

Thank you for helping with this important fundraising event.  Attached is a the ICE 20/20 Flyer and the ICE 2010 Newsletter.  Have Hope for the Holidays!