About Jamie Cohen

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So far Jamie Cohen has created 57 blog entries.

COVID-19 & Conference

By |2020-03-18T11:29:28-05:00March 18th, 2020|Categories: Our Community|

COVID-19 & DSF Conference Update Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). At [...]

VALTOCO® Nasal Rescue Available

By |2020-03-18T11:24:15-05:00March 18th, 2020|Categories: Research / Treatments|

VALTOCO® Nasal Rescue Commercially Available Neurelis, Inc., recently announced the commercial availability of VALTOCO® (diazepam nasal spray) for the acute treatment of intermittent, stereotypic episodes of frequent seizure activity (i.e., seizure clusters, acute repetitive seizures) that are distinct from a patient's usual seizure pattern in adult and pediatric patients 6 years of age [...]

COVID-19 Webinar

By |2020-03-18T12:51:14-05:00March 18th, 2020|Categories: DSF Programs|

Free Webinar: Coronavirus (COVID-19) Resources for DEE Families DEE-P Connections is hosting a special webinar, Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19 on March 19 from 8-9pm ET. This webinar will be moderated by Heidi Grabenstatter, PhD - Science Director of the International Foundation for CDKL5 Research, and will feature three [...]

In-Person Events Postponed

By |2020-03-18T12:51:57-05:00March 18th, 2020|Categories: Events|

In Person Events Postponed ALL IN-PERSON EVENTS THROUGH JUNE POSTPONED It is with great disappointment that we are announcing the postponement of all in person fundraising events through June 30, 2020. With the dramatic escalation of the spread of COVID-19 in the last few weeks, we believe the only responsible choice is to [...]

Belviq Market Withdrawal

By |2020-03-18T13:41:21-05:00March 18th, 2020|Categories: Research / Treatments|

Belviq Recall The pharmaceutical company, Eisai, recently withdrew Belviq (lorcaserin) from the market at the request of federal regulators. Some members of our patient community began taking Belviq off-label, after reports that it potentially helped with seizure control, even though it received FDA approval as a weight-loss drug. The abrupt withdrawal of Belviq [...]

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 [...]

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 [...]