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
Join DSF for Storytelling Sessions Read More »
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 »
Tina’s son Ryan was diagnosed with Dravet Syndrome at the age of six but had been having seizures from nine weeks old. It took 3 different Neurologists to figure it out. Tina has shared and will continue to share her story and that is why she became an Ambassador for the Midwest Region. Unfortunately, Ryan
Tina McDermott – IA (Midwest) Read More »
Jen is originally from Hollidaysburg, Pennsylvania, and her family currently resides in Verona, PA (near Pittsburgh). She and her husband Chris have been married since 2014 and have two beautiful daughters: Maggie, age 6, and Cora, age 3. Cora was diagnosed in 2021 at 9 months young with Dravet Syndrome. Jen is a licensed geriatric
Jennifer Marasco-Kuhn – PA (Northeast) Read More »
Kayci Capps- MO (Midwest) Kayci is a mom to three amazing kids, Benjamin, William, and Charlotte. She is also a Kindergarten teacher at a local public school. Her husband, Adam, is in the Air Force and they currently live near St. Louis, Missouri. Her middle son, William, was diagnosed with Dravet syndrome at 6 months
Kayci Capps – MO (Midwest) Read More »
We are excited to welcome our three new board members who began their 3-year term of service on April 15, 2022. Learn more about them below and join us in welcoming them to #teamDSF! Nathan Batt Nathan lives in Atlanta, Georgia with his wife Whitney, and his two sons: Cooper 5 and Colton 3. Cooper
Welcome to our New Board Members! Read More »
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