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 [...]
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 [...]
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 [...]
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 [...]
Meet Southeast Parent Ambassador, Shannon Cloud! This #MemberMonday meet Board Secretary and fellow Dravet mom, Kate Hintz! Kate’s daughter Morgan was diagnosed with Dravet Syndrome at only 6 months old. Although they received an early diagnosis, Morgan was medically fragile for the first 2 years of life; suffering frequent seizures and related medical complications. Her [...]
Meet Mountain Region Parent Ambassador - Shawna Davis! This #MemberMonday meet Mountain Region Parent Ambassador Shawna Davis! Shawna was born and raised in Texas and currently resides in the Fort Worth area with her husband, Jeff, and their two daughters, Kendall and Karley. Karley is their youngest and who diagnosed with Dravet syndrome shortly [...]
Meet Erin Reoyo, one of our inaugural West Coast Parent Ambassadors! This #MemberMonday meet West Coast Parent Ambassador: Erin Reoyo! Erin lives in Washington just north of Seattle with her husband, son, and daughter. Her son was diagnosed with an SCN1A-gene mutation and Dravet Syndrome (DS) in April 2016, shortly after his second birthday. [...]
Meet our first male Parent Ambassador - Steve Carlin! This #MemberMonday meet Southeast Region Parent Ambassador Stephen Carlin! Steve lives in Clayton, NC near Raleigh with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet syndrome (DS) in 2013 at the age of four. Being self-employed has allowed Steve [...]
DSF Board Member Ted Odlaug with granddaughter Anna. Ted Odlaug This #MemberMonday meet our newest Board Member, Ted Odlaug! "I first learned of the Dravet Syndrome Foundation (DSF) soon after my granddaughter Anna, was diagnosed in May 2018. She was just over 7 months old at that time. None of us knew anything [...]
Decoding Dravet Decoding Dravet is DSF's new blog to help you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. Written by Executive Director, Mary Anne Meskis, it will also feature guest bloggers later this year. Decoding Dravet will keep you up to date on current [...]
