About Jamie Cohen

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So far Jamie Cohen has created 143 blog entries.

Newly Diagnosed Patient Kits

By |2021-09-15T10:56:30-05:00September 16th, 2021|Categories: DSF Programs|

Newly Diagnosed Patient Kits When a family first receives a diagnosis of Dravet syndrome for their child, they may feel overwhelmed and unsure where to begin. Often your first instinct is to turn to the internet for more information. But with a rare disease such as Dravet syndrome, general information you may find [...]

Dance for Dravet St. Louis

By |2021-09-15T09:43:43-05:00September 16th, 2021|Categories: Events|

Dance for Dravet Join us for a night of fun & fundraising at Dance for Dravet in Honor of Anna. Taking place at Third Degree Glass Factory in St. Louis, Missouri, the evening includes appetizers, dinner, drinks, dancing, and silent and live auctions. Tickets are now on sale for $100 per person. Purchase [...]

Day of Dravet Registration

By |2021-09-15T09:43:53-05:00September 16th, 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 of [...]

Surgery & Procedures

By |2021-09-15T09:44:22-05:00September 16th, 2021|Categories: Research / Treatments|

Surgery & Procedures in Dravet Syndrome Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube [...]

Strategic Plan Update

By |2021-09-15T09:44:32-05:00September 16th, 2021|Categories: DSF Programs|

2020-2021 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]

COVID-19 Vaccine Survey Results

By |2021-08-16T07:52:34-05:00August 16th, 2021|Categories: Research / Treatments|

Dravet Syndrome and COVID-19 Vaccination As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common [...]

Community Spotlight

By |2021-08-17T15:05:35-05:00August 16th, 2021|Categories: Our Community|

Meet Dan Hartley, his daughter Bri, and McCall! In this Community Spotlight meet Dan Hartley and learn about his new multi-year fundrasising and awareness event – Miles for McCall! Dan Hartley is a 49-year-old, US Navy Veteran and business owner, who is a former semi-professional ultra-runner who has competed in numerous ultramarathons and 100-mile [...]

Virtual Steps Toward a Cure

By |2021-08-12T08:26:36-05:00August 16th, 2021|Categories: Events|

Steps Toward a Cure Virtual Walk Mark your calendars and join DSF for our virtual Steps Towards a Cure event! In place of our annual walk and race events we have put together a virtual 1 mile walk, family stroll, or run across the United States that everyone can participate in! Register now [...]

Adult Neurology Training

By |2021-08-16T11:19:57-05:00August 16th, 2021|Categories: Research / Treatments|

Education Participation Survey There is currently suboptimal exposure to Dravet syndrome in adult neurology training. We believe exposure to Dravet syndrome should be optimized in adult neurology residency training since adult providers will be caring for adults with Dravet. In an attempt to address this educational gap, DSF invites you to join an [...]

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