Tell us about yourself and the Dravet patient in your lifeHello we are the Lay family and we live in Missouri. My husband and I have two boys Finley and our Dravet Warrior, Benton. Both boys are rough and tough. They love to play outside, swim, cook, and play on their tablets. Hanging out with […]
Tell us about yourself and the Dravet patient in your lifeWe are a family of 3. My husband, Dominic and myself. We have 2 dogs and 2 cats. We live in the Pittsburgh, Pa area. We love to go to amusement parks, swim, play outside, dance, sing, attend church and listen to music. What brings
Tell us about yourself and the Dravet patient in your lifeWill is our middle child with a de novo SCN1A mutation. He loves balls, cars, music, wearing one shoe and playing peek-a-boo. We live in southeast Missouri and enjoy going to the St. Louis Zoo, going on walks as a family with Will’s service dog,
Tell us about yourself and the Dravet patient in your lifeJuniper is our first child and such a joy. Her journey started in California before we moved back to beautiful New Mexico shortly after she was born. We find joy in the outdoors and spending time with family. Watching life through her eyes is the
Last week, I had the honor of re-introducing our veteran Parent Ambassadors and introducing our newest Parent Ambassadors from the Midwest. This week, it is my pleasure to continue those introductions and hope you’ll join me in welcoming our newest Parent Ambassadors from the Northeast and West regions: Jennifer Marasco-Kuhn – Pennsylvania (Northeast region) Jennifer
DSF Parent Ambassador Introductions – Part 2 Read More »
Austin’s son, Owen, was diagnosed with Dravet syndrome in November of 2014 at the age of 13 months. In the spring of 2015, she and her family attended an epilepsy conference in California. There they met Dr. Charlotte Dravet and veteran Dravet families. The love and advice the Watsons received from those families forged deep
Austin Watson – ID (West) Read More »
Melissa is a proud wife and mom of four boys. Conner, Dylan, Owen and Grady. Her son, Owen, had his first seizure when he was six months old which eventually led to his diagnosis of Dravet at the age of three. Before their move from SE Alaska, their family traveled by airplane to all their
Melissa O’Bryan – AK (West) Read More »
Richard was born, raised, and currently resides in Enumclaw, WA. He has spent most of his career working in a local manufacturing plant programming welding robots and as an IT Analyst. He is married and has two boys, Owen and Zachary. Richard now spends most of his time troubleshooting and repairing off-road vehicles and buggies.
Richard Maxey – WA (West) Read More »
As our community knows, rare diseases don’t receive as much attention from researchers or funders like diseases that affect larger populations. Most people do not know about Dravet syndrome unless they are directly connected to it in some way. This is why DSF works so hard to raise awareness about Dravet syndrome, and why we
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Colleen and her husband, David, live in Madison, Wisconsin and are proud parents to three adult children, one of whom lives with Dravet syndrome. Colleen’s education is in journalism and marketing. In her early career, she worked at public relations agencies in Minneapolis and Madison and had a small consulting firm. A consummate Jane-of-all-trades, her
Colleen Murphy Penwell – WI (Midwest) Read More »
