Double Down Beantown

By |2019-07-15T16:37:45-05:00July 16th, 2019|Categories: Our Community|

2019 Double Down Beantown – Boston Bets Against Dravet Congratulations and thank you Karina & Daniel Fischer, Lauren & Jon Forker, Stephanie & Josh Goldman, Abby & Micah Hemani, Amy & Lenny Lopez, and Barbara & John Swoyer. These 6 Boston area families joined forces to host an amazing first time gala fundraiser [...]

#MemberMonday

By |2019-05-17T13:40:17-05:00June 17th, 2019|Categories: Our Community, Uncategorized|

Meet Southeast Region Parent Ambassador, Kimberly Brorson! This #MemberMonday meet Southeast Parent Ambassador, Kimberly Brorson! Kimberly resides in Fredericksburg, VA with her husband Bendik, Dravet child Lucy, Amelia and twin girls Madeline and Elise. Post Dravet diagnosis for Lucy, Kimberly took leave as a commercial pilot to be a full time care taker for [...]

Researcher Spotlight

By |2019-06-13T16:58:26-05:00June 15th, 2019|Categories: Our Community|

Danielle Andrade, MD, MSc, FRCPC Please welcome our newest Medical Advisory Board (MAB) member, Danielle Andrade, MD. Dr. Andrade has devoted her time and medical expertise to improving the lives of those afflicted with Dravet syndrome and associated epilepsies. As a MAB member, she offers input on clinical trials that impact the Dravet [...]

#MemberMonday

By |2019-05-17T13:52:55-05:00June 10th, 2019|Categories: Our Community, Uncategorized|

Meet Midwest Region Parent Ambassadors, Kathy and Bob Dodd! This #MemberMonday meet Midwest Parent Ambassadors, Kathy and Bob Dodd! Bob and Kathy live in a suburb of Chicago with their 2 daughters, Cameron and Stacy. Stacy, now age 20, had her first seizure in January 1999 and was diagnosed with Dravet Syndrome in August [...]

#MemberMonday

By |2019-05-17T13:12:57-05:00June 3rd, 2019|Categories: Our Community, Uncategorized|

Meet Mountain Region Parent Ambassador, Lynne Howard! This #MemberMonday meet Mountain Region Parent Ambassador: Lynne Howard! Lynne lives in the North Texas area with her husband Elliot, and two daughters Elina and Elissa.  Elissa is their youngest daughter,  diagnosed with Dravet Syndrome in 2012 after genetic testing confirmed SCN1A gene mutation. After taking time off [...]

#MemberMonday

By |2019-05-17T13:34:14-05:00May 27th, 2019|Categories: Our Community, Uncategorized|

Meet West Coast Parent Ambassador, Morgan Turpin! This #MemberMonday meet West Coast Parent Ambassador: Morgan Turpin! Morgan lives just north of San Diego with her husband Sean and their son and daughter. Their oldest, Shayne (now 6), was diagnosed with a mutation in the SCN1A gene when he was fourteen months old. It would [...]

#MemberMonday

By |2019-05-17T13:34:36-05:00May 20th, 2019|Categories: Our Community, Uncategorized|

Meet Mountain Region Parent Ambassador, Gloria Rodriguez! This #MemberMonday meet Mountain Parent Ambassador Gloria Rodriguez! Gloria lives in Pasadena, TX with her husband Ascension and two daughters Madlyn (16) and Grace (5). Grace was diagnosed with Dravet syndrome at 14 months old after a genetic test confirmed an SCN1A gene mutation. Gloria and her [...]

#MemberMonday

By |2019-05-13T13:44:08-05:00May 15th, 2019|Categories: Our Community|

Meet our new Administrative Coordinator, Jenny Gallo! This #MemberMonday meet our newest staff member, Jenny Gallo! Jenny has been an active fundraiser and advocate for Dravet syndrome since her daughter Lena was diagnosed. She officially joined #teamDSF as a Parent Ambassador for the Northeast Region representing the northern New Jersey and New York City [...]

#MemberMonday

By |2019-05-13T08:58:01-05:00May 12th, 2019|Categories: Our Community, Uncategorized|

Meet Midwest Parent Ambassador, Tina McDermott! This #MemberMonday meet Midwest Parent Ambassador: Tina McDermott! Tina and her husband Brad have six children. Their youngest, Ryan, was diagnosed with Dravet Syndrome in 2012 at the age of six. Through fierce advocacy Tina was able to get Ryan the testing he needed to see the proper [...]

#MemberMonday

By |2019-05-13T13:57:38-05:00April 29th, 2019|Categories: Our Community, Uncategorized|

Meet Southeast Parent Ambassador, Shannon Cloud! This #MemberMonday meet Southeast Parent Ambassador: Shannon Cloud! Shannon lives in Smyrna, GA (in the metro Atlanta area) with her husband Blaine and their three children.  Their oldest child, Alaina, was diagnosed with Dravet Syndrome in 2009 at age 4. Shannon is originally from Pickerington, Ohio and graduated [...]