Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

2020 DSF Patient Assistance Grant Program

By |2021-04-27T14:31:15-05:00February 28th, 2020|Categories: Decoding Dravet Blog|

2020 DSF Patient Assistance Grant Program As our community well knows, living with Dravet syndrome has significant direct and indirect costs for the patient's family. In a 2018 publication it was found that the average total annual financial burden for a family with a child with Dravet syndrome was $106,378. These costs included direct [...]

Belviq recall and off-label use in the Dravet community

By |2020-03-10T12:13:49-05:00February 21st, 2020|Categories: Decoding Dravet Blog|

It is not uncommon in a rare disease like Dravet syndrome (DS) to have a physician prescribe a medication for “off-label” use by their patient. This means that the drug is not being used in the manner specified in the FDA’s approved package labeling and is being used for a disease that it is not [...]

2017 Research Grant Publication

By |2020-02-17T11:24:23-05:00February 17th, 2020|Categories: Research / Treatments|

2017 Research Grant Recipient Publication DSF is pleased to share that 2017 research grant recipient David R. Hampson, PhD, had his paper on gene therapy published in the journal "Gene Therapy." Dr. Hampson's grant, Exploring gene therapy to treat sudden unexpected death and other pathological features of Dravet syndrome had a goal to [...]

Upcoming Webinar on IEPs

By |2020-02-17T10:50:53-05:00February 17th, 2020|Categories: DSF Programs|

Free Webinar: IEPs for Children Severely Affected by DEEs DEE-P Connections is hosting an introductory webinar about Individualized Education Plans (IEPs) on Wednesday, February 26th at 2pm. This webinar, led by Monika Jones, JD CEO of The Brain Recovery Project, is aimed at helping families of children severely affected by DEEs navigate the [...]

New ICD-10 Codes for Dravet

By |2020-03-10T12:54:40-05:00February 17th, 2020|Categories: Research / Treatments|

DSF is pleased to announce that we now have ICD-10 codes for Dravet syndrome. The International Classification of Disease (ICD) is a system used by healthcare providers to classify and code diagnoses, symptoms, and procedure recorded in conjunction with hospital care in the U.S., and it is important for health insurance reimbursement, administration, epidemiology, and [...]

Ciara’s Spirit of Hope

By |2020-02-17T10:47:24-05:00February 17th, 2020|Categories: Our Community|

Ciara's Spirit of Hope Award Nominations Nominations are now open for the 2020 Ciara's Spirit of Hope Award! From 2010-2015 the Spirit of Hope award was presented annually to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash. It recognized parents, siblings, and volunteers whose dedication through service to DSF is truly outstanding and inspiring. Ciara’s Butterfly [...]

Will You Give Up Your Cup?

By |2020-02-17T10:51:59-05:00February 17th, 2020|Categories: Events|

Give Up Your Cup Each March, DSF challenges you to Give Up Your Cup. This annual virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to [...]

Happy Valentine’s Day to Our Caregivers

By |2020-03-10T13:02:30-05:00February 14th, 2020|Categories: Decoding Dravet Blog|

This Valentine’s Day, I want to recognize and applaud the amazing caregivers in our community. It may not seem like a traditional message for this holiday, but Valentine’s Day is about celebrating love. And let’s face it - what we do as caregivers, day in and day out, is a constant expression of love. It [...]

New rescue medication options for the Dravet community

By |2020-03-10T13:08:37-05:00February 7th, 2020|Categories: Decoding Dravet Blog|

Those with Dravet syndrome have epilepsy that is typically not well controlled. In addition to frequent seizures, many patients regularly experience status epilepticus, which are prolonged seizures lasting more than 5 minutes. This is a serious medical emergency which can be life threatening and requires emergency intervention with rescue medications. Patients may also experience seizure [...]

SCN8A Antisense Oligonucleotide is Protective in Mouse Models of SCN8A Encephalopathy and Dravet Syndrome

By |2020-04-07T10:49:03-05:00February 6th, 2020|Categories: DSF Research Review|Tags: , , |

Dravet Syndrome is caused by loss-of-function mutations affecting the NaV1.1 sodium channel.  In a July 2019 research summary, we pointed out that gain-of-function mutations in another sodium channel, called NaV1.6, can lead to severe epileptic conditions - suggesting that NaV1.1 and NaV1.6 exist in a balance that maintains proper nerve conduction.   This raised the possibility [...]


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