Our Day of Dravet workshop on Saturday, October 30, beginning at 12:00pm ET, will focus on sessions that will be helpful for families who are new to the diagnosis of Dravet syndrome. Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be helpful for your child’s care. Sessions are presented by community experts – including other parents.
Robyn Blackford, RDN, LDN – Ann & Robert H. Lurie Children’s Hospital of Chicago: Robyn has worked as the expert ketogenic dietitian at Lurie Children’s in Chicago since 2005. She has helped initiate and grow the formal Ketogenic Diet Program where the Keto Team there currently follows over 350 patients on ketogenic therapies and has helped to make Lurie Children’s one of the largest Keto Centers in North America. Robyn has several publications on the Ketogenic Diet, including being an author for the International Ketogenic Diet Consensus Statement, and routinely gives presentations about the diet to a variety of audiences. She has a passion for setting up families to be successful with following diet goals, as well as supporting and mentoring other health professionals who guide patients on ketogenic therapies. Robyn lives outside of Chicago with her husband and two teenagers and enjoys family vacations and game nights.
Sirena Denbow: Sirena has been working in the field of Social Security for 20 years. She started off as a legal assistant, then sat for the certification test to become a Non-Attorney Representative in December 2011. Her mentor, Jeanette Laffoon, Esq., is now tutoring her in a law program to prepare her to sit for the bar. She has her AA from Green River Community College and a BA from Evergreen State College. She is also a parent to a 13 year old daughter with Dravet syndrome.
Bethany Goering: Bethany Goering lives just outside Philadelphia Pennsylvania with her husband, Brad. They have twin 13 year old daughters, Kyelynn and Taylor, and a 12 year old son, Caleb. Currently Bethany works as an in-patient nurse at the Children’s Hospital of Philadelphia. Bethany and the family have been very involved with the local Epilepsy Foundation and the Dravet Syndrome Foundation. They have also formed the Kyelynn Goering Foundation, which focuses on local epilepsy advocacy and helping out other epilepsy diagnosed families. Kyelynn, who has Dravet syndrome, had her first seizure of many seizures, while on a family vacation at 4 months old in 2008. In 2009, one week before Caleb was born, Kye’s genetic results returned with a SCN1A mutation. In 2014, Kyelynn received her service dog London Rose from 4 Paws for Ability. London will be retiring in the next few years and the Goering family is beginning to work on preparing for Kye’s next service dog, tentatively expected in 2023.
Veronica Hood, PhD: Veronica joined DSF in 2020 as their Scientific Director. She has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the University of Colorado. She spent 10 years in laboratory settings researching how small changes in genetic and molecular regulation contribute to complex neurological diseases. In 2007, Veronica had a son, Gabriel, who faced severe developmental challenges. Gabriel presented with initial seizure activity within his first two months of life, and his medical needs quickly became quite complex. Despite endless testing, a diagnosis remained elusive, and at the age of 8, Gabriel passed away. These experiences fueled Veronica’s passion to advance medical research and shaped her desire to support other families facing similar challenges. She hopes to apply her scientific knowledge and her understanding of the caregiver experience to support the Dravet community by facilitating Dravet-focused research and acting as a liaison between researchers, professionals, and families. Veronica currently lives in Tennessee. She enjoys spending time with her partner Scott and their pets and being outdoors in her free time.
Jeanette Lafoon, Esq.: Jeanette was born in 1961 in Los Angeles, but spent most of her childhood in Ottawa, Canada. She obtained a BA in Economics from Rice University in Houston, a school selected in part because the decidely un-Canadian winters there. In 1987, Jeanette earned her law degree from the University of Denver and proceeded to work in several different areas of law. She found the work rather tedious however until 1995, when she helped organize a nonprofit legal clinic to provide services to disabled individuals needing access to medical care in Denver. She found her calling and has been speaking up for disabled individuals since. In 1999 Jeanette moved to Olympia, WA, to focus on SSI and Social Security disability law. She worked with Elie Halpern & Associates before joining Steve to form the law firm of Maddox & Lafoon in 2005. She loves life in the beautiful, soggy Pacific Northwest with two teenagers, cats, and two fuzzy bunnies. Her core belief is that every one of us has something valuable to offer in this life and deserves to be treated with dignity and compassion.
Mary Anne Meskis: Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition to her role at DSF she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council, as well as several other advisory panels. She has owned and managed several small businesses with an emphasis on project management in the private sector for over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational development and staff management and has continued to expand programming and fund development for DSF. Mary Anne resides in North Carolina with her husband and the youngest of her three children, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.
Erin Reoyo: Erin is the newest member to our DSF Team and serves as our Family Network Support Group Liaison. Erin and her husband Leo reside just outside of Seattle, WA, and are parents to Eloise and Leonel. In October 2019, the Reoyo family welcomed the newest member to their family- Elyssia, a goldendoodle Service Dog from 4 Paws for Ability in Xenia, Ohio.
Morgan Turpin: Morgan is a full-time Clinical Laboratory Scientist, with a focus in Molecular Genetics. She has served as a parent ambassador for the Dravet Syndrome Foundation since 2019. She is an advocate within the Dravet community, and has given multiple talks to spread awareness for Dravet Syndrome, Epilepsy, and the utility of seizure-alert service dogs. Morgan resides in San Diego with her husband and two children. Her oldest child, Shayne, is 9 years old and was diagnosed with Dravet Syndrome at age 2. He has a retired seizure-alert and Autism assistance service dog named Bridget, and will be receiving his second service dog from 4 Paws for Ability in January 2022.