Meet Elizabeth and Madison! In this Community Spotlight meet Elizabeth and her twin sister, Madison. Elizabeth wrote us this really sweet letter and we just had to share it with our community! To begin, I would like to thank you for all the hard work you do. From holding conventions to zoom meetings, your tremendous […]
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Meet Nathan! In this Community Spotlight meet Nathan Blatt. On May 23rd, Nathan competed in the Ironman 70.3 Chattanooga in honor of his sons, Cooper and Colton. After receiving a diagnosis of Dravet syndrome when Cooper was 1 ½ years old, Nathan and his wife, Whitney, were also tested for the genetic mutation. Tests revealed
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#fightdravet June is Dravet Syndrome Awareness month and June 23rd is International Dravet Syndrome Awareness Day. This year, we are recognizing those that we have lost on our first annual Remembrance Day, June 15th. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient
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Dravet Remembrance Day Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease. Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of Dravet syndrome
Momentum 1 Phase 3 Clinical Trial New Clinical Study Offers Change to Further Research in Dravet Syndrome If your child or a loved one has Dravet syndrome, you know that it affects the whole family. Dravet syndrome, a lifelong disease marked by prolonged, frequent seizures, requires constant care and can significantly impact quality of life
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Incoming and Outgoing Board Presidents, Kate Hintz & Nicole Villas Please join us in thanking Nicole Villas for volunteering on DSF’s Board of Directors for the last 6 years. Nicole joined the board in April 2015, serving as president since 2016. In addition to leading the board, Nicole also served as Scientific Director. In this
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Meet Heather & Luella! In this month’s Community Spotlight meet Heather Johnson and her Dravet Warrior, 11-year-old Luella. Heather and Luella have helped spread awareness and raise funds for DSF over the years in a variety of ways. One of the most notable ways is their annul campaign, a cake 4 a cure. Heather’s initial
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New Study Opportunity for Adults with Dravet Syndrome Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part of the study is examining patients that visit Dr.
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Give Up Your Cup Each March, DSF challenges you to Give Up Your Cup. This annual virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to raise funds
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Finding Resilience Through Reframing: Parents’ Perspectives As a Dravet parent or caregiver, have you ever thought about the term “reframing?” Community member Barbara Swoyer recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine. In this piece, Barbara incorporated the thoughts of others in the Dravet community about what reframing means
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