Dravet Syndrome and Social Security

By |2021-10-27T09:28:29-05:00October 27th, 2021|Categories: Uncategorized|

Session Handouts: Presentation Outline Compassionate Allowance Information Listing 11.02 for Adults Listing 111.02 for Children How Social Security Evaluates Epilepsy under Listing 111.02 Helpful tips for Lay & Medical Statements Teacher Questionnaire

Researcher Spotlight

By |2021-10-27T08:56:19-05:00October 27th, 2021|Categories: Our Community|

Meet Lori Isom, PhD In this Researcher Spotlight meet DSF's Scientific Advisory Board (SAB) Co-Chair, Lori Isom, PhD. As a SAB member, Lori reviews and approves all research grant applications and meets annually with other interested researchers and scientists to discuss innovative and promising research in the field of Dravet syndrome and associated [...]

Day of Dravet Registration

By |2021-10-26T16:30:59-05:00October 27th, 2021|Categories: DSF Programs|

2021 Day of Dravet Registration is Open Join the DSF Family Network for our 5th annual Day of Dravet workshops this October! DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part [...]

In-Person Events Are Back

By |2021-10-27T08:51:50-05:00October 27th, 2021|Categories: Events|

Steps Toward a Cure: Atlanta After having to make the tough decision to cancel all-in person events last year, we are excited to have finally had our first in-person event since February 22, 2020. On Saturday, October 16,11 Dravet families joined friends and family for Steps Toward A Cure: Atlanta. This 1 mile [...]

Adult Providers Transition Guide

By |2021-10-27T08:53:56-05:00October 27th, 2021|Categories: Research / Treatments|

Dravet Syndrome Transition Guide Transition of care, or the process of moving from pediatric to adult health care providers, is one of the most challenging issues facing adults with Dravet syndrome and their families. DSF worked with our Medical Advisory Board to help address one of the issues that families with Dravet syndrome face [...]

Dash for Dravet: Virtual Event

By |2021-10-26T11:51:57-05:00October 27th, 2021|Categories: Events|

Dash for Dravet:   Virtual Event Here is your chance to get your family and friends together for our 6th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! This virtual 5K can be accomplished anywhere in the [...]

Dash for Dravet is BACK for it’s 6th year!

By |2021-10-09T20:15:23-05:00October 22nd, 2021|Categories: Decoding Dravet Blog|

Here is your chance to get your family and friends together for our annual Dash for Dravet on Turkey Day, and help us raise funds to further research in Dravet syndrome and support the important programs of DSF! This virtual 5K can be accomplished anywhere in the United States before, on or after Thanksgiving! Run, [...]

Why Attending DSF’s Upcoming Dravet Syndrome Externally-Led PFDD Meeting is Vital

By |2021-09-29T15:32:14-05:00October 15th, 2021|Categories: Decoding Dravet Blog|

DSF is very excited to announce that we will be holding an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on Thursday, February 3, 2022. An EL-PFDD meeting is critical to ensure the FDA has an informed understanding of the patient experience for those living with Dravet syndrome. As our community knows, the patient voice is critical [...]

Dravet Syndrome Transition Guide

By |2021-10-07T23:54:20-05:00October 8th, 2021|Categories: Decoding Dravet Blog|

Transition of care, or the process of moving from pediatric to adult health care providers, is one of the most challenging issues facing adults with Dravet syndrome and their families. Transition of care can be challenging in general when a patient has a complex medical history and requires a large team of health care providers [...]

Highlights from the Stem Cell and Gene Therapy for Neurodevelopment Disorders Conference

By |2021-09-30T23:59:57-05:00October 1st, 2021|Categories: Decoding Dravet Blog|

Last week, I had the opportunity to attend the first annual Stem Cell and Gene Therapy for Neurodevelopmental Disorders Conference hosted by the University of California (UC) Davis MIND Institute. The conference brought together many leaders in academic research focused on finding restorative cures for genetic diseases like Dravet syndrome. Although the conference was only [...]

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