Helping to Move Research Forward

By |2020-11-26T21:11:17-05:00November 27th, 2020|Categories: Decoding Dravet Blog|

DSF was built around the need to fund Dravet syndrome-specific research in order to assure better treatment options and the best quality of life for our patient community. The founding members discovered that epilepsy research in general was underfunded and by the time you funneled down to a rare epilepsy, such as Dravet syndrome, there [...]

Giving Thanks for DSF’s Community and Supporters

By |2020-11-16T17:45:39-05:00November 20th, 2020|Categories: Decoding Dravet Blog|

As Thanksgiving approaches, I am struck by the debt of gratitude I have for the many people - including patient families, clinicians, researchers, supporters, and organizations - that have enabled DSF to serve the Dravet syndrome community by funding important research, raising awareness, and offering support to affected individuals and their families. Living with Dravet [...]

Seizure Action Plan Coalition

By |2020-11-13T12:46:37-05:00November 16th, 2020|Categories: DSF Programs|

Dravet Syndrome and Caregiving: Your Voices Heard and Answered The Dravet Syndrome Foundation, in collaboration with the Lennox-Gastaut Syndrome Foundation and the Tuberous Sclerosis Alliance, recently announced that they have launched the Seizure Action Plan (SAP) Coalition to educate people with epilepsy, their caregivers, and healthcare professionals about seizure emergency rescue protocols and the importance of personalized [...]

#MemberMonday Spotlight

By |2020-11-16T13:53:47-05:00November 16th, 2020|Categories: Our Community|

Meet Jim Brennan! This #MemberMonday meet Jim Brennan! James G. Brennan is the owner and President of McKelvey Homes, St. Louis’s oldest and most established homebuilding company. With more than 35 years of experience in real estate, construction and homebuilding, Jim is well-known for his community service and his activities on behalf of [...]

2020 PAME Meeting

By |2020-11-11T14:37:37-05:00November 16th, 2020|Categories: Research / Treatments|

Partners Against Mortality in Epilepsy Meeting 2020 PAME – Even a Pandemic Can’t Stop the Quest Monday, December 7, 2020 2:30 pm – 4:30 pm Eastern Partners Against Mortality in Epilepsy (PAME) is a collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people [...]

Interactive Education

By |2020-11-16T13:59:28-05:00November 16th, 2020|Categories: Research / Treatments|

Dravet Syndrome and Caregiving: Your Voices Heard and Answered Mark your calendar for Monday, November 23 at 12:00 PM EST! Dravet Syndrome and Caregiving: Your Voices Heard and Answered We are excited to announce a new live, interactive, virtual education program created for caregivers of children or adults with Dravet Syndrome. This program [...]

Seizure Action Plan Coalition

By |2020-11-11T10:39:13-05:00November 13th, 2020|Categories: Decoding Dravet Blog|

The Dravet Syndrome Foundation, in collaboration with the Lennox-Gastaut Syndrome Foundation and the Tuberous Sclerosis Alliance, announced last week that they have launched the Seizure Action Plan (SAP) Coalition to educate people with epilepsy, their caregivers, and healthcare professionals about seizure emergency rescue protocols and the importance of personalized seizure action plans. The SAP Coalition [...]

The impact of COVID-19 in Dravet Syndrome: a UK survey

By |2020-11-10T10:26:47-05:00November 10th, 2020|Categories: DSF Research Review|Tags: , , , |

The COVID-19 pandemic has raised health concerns worldwide, but particularly in communities that may be at higher risk from illness and infection. To understand this better in the Dravet syndrome community, Dravet Syndrome UK (DSUK) performed a survey of families caring for an individual living with Dravet syndrome from June-July 2020 to assess the impacts [...]

Partners Against Mortality in Epilepsy Meeting 2020

By |2020-11-02T17:11:10-05:00November 6th, 2020|Categories: Decoding Dravet Blog|

Sudden Unexpected Death in Epilepsy (SUDEP) is a fatal complication of epilepsy, and a significant worry for the Dravet syndrome community. The precise cause of death in SUDEP is not yet understood. And while research is being done to look at all possible causes or potential genetic links, more research is still needed. You can [...]

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