Dravet Syndrome Foundation Readies for Online ‘Day of Dravet’

Dravet Syndrome Foundation Readies for Online ‘Day of Dravet’
0
(0)

Bringing together patients and their families — virtually, this year — the Dravet Syndrome Foundation (DSF) will present its fourth annual Day of Dravet workshop Oct. 17.

The free event is an opportunity to learn more about treatment options and the latest Dravet syndrome research, connect with other Dravet families, and join the DSF’s mission to improve patient outcomes. Registration closes Oct. 14.

Registrants will hear from epilepsy experts in morning workshops, followed by regional breakout sessions in the afternoon. Because there is no in-person Day of Dravet Super Sibling Camp this year, the workshop also will feature a session for the brothers and sisters of those with Dravet. Workshop participants may register their child or children here.

The first 400 U.S. families that register for the workshop are guaranteed an event tote bag and informational materials. During the event, attendees will have a chance to win DSF “swag” (promotional products or branded merchandise).

The week of the event, registrants will receive via email information about how to sign in for the workshops. For those who wish to try out their computer before connecting to the workshops, a technology test will be offered early Oct. 17.

Workshop presenters will include Scott Perry, medical director, neurology, Cook Children’s hospital in Texas, and co-director of the Jane and John Justin Neurosciences Center; Elaine Wirrell, director of pediatric epilepsy, and professor of neurology, Mayo Clinic, Rochester, Minnesota; neurologist Douglas Smith, who established a clinic at the Minnesota Epilepsy Group that is dedicated to rare genetic causes of epilepsy; and Veronica Hood, the DSF’s new research coordinator and parent of Gabriel, who experienced seizures and faced severe developmental challenges, but died without a diagnosis.

Workshop session topics will include a Dravet syndrome overview, Dravet genetics, treatments, research, and caregiver stress during the COVID-19 pandemic. There also will be multiple question-and-answer opportunities.

For more information about the event, send an email to [email protected].

A rare condition that affects one in 20,000 to 40,000 people globally, Dravet is a severe type of epilepsy characterized by prolonged seizures that begin in the first year of life. At length, most patients also experience cognitive impairment and muscle coordination weakness known as ataxia.

The DSF raises funds for research, to increase awareness, and to support patients and their families.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 3

Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.

×
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Latest Posts
  • Online Day of Dravet
  • Community Day conference

How useful was this post?

Click on a star to rate it!

Average rating 0 / 5. Vote count: 0

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?