Learn more about the 24 Hour World Time Trial Championship WTTC Fun Facts: Borrego Springs, CA – Located in Southern California Anza-Borrego Desert 60 metal sculptures by Ricardo Brecada 6, 12 & 24 Hour Race (Dan will be racing for 24) 95 Participants in 24 Hour Solo Race (77 Men & 18 Women representing 14 […]
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I am the mother of 28 year-old Brian. We live in Knoxville, TN. I was a college French professor at Carson-Newman University, until I had to quit in 2000 because of Brian’s seizures and me being an hour away. My husband Tom was a research physicist at Oak Ridge National Lab. His research took a
Your commitment and engagement as part of the DSF community has been instrumental in the progress that has been made for patients and families living with Dravet syndrome in the last decade. Now more than ever, we need your help! Dravet Syndrome Awareness Month takes place each June in the U.S. This is our annual
2021 Dravet Syndrome Awareness Month Read More »
This year, we are encouraging our families and supporters to help us Fight Dravet by participating in a virtual fundraising event through June 30th You can participate in our Join the Fight Challenge by registering for free at www.fightdravet.org. When you set up your personal campaign page, be sure to tell your story about your
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Our family moved to Houston, Texas to get better medical care when we found out our sweet Andie was diagnosed with Dravet Syndrome. We have a great familial support system here and feel so blessed to be surrounded with so much family. Our family loves everything outdoors. We love discovering new places together through hiking,
My second son has Dravet syndrome. He is 27 years old. We live in Japan. A local nonprofit, Pokkapoka Runners, matches participant runners with disabled individuals. Participants deepen their interactions with disabled people through training sessions, practice sessions, etc. Thanks to this activity, my second son is able to run. When did Kiyonori’s seizures begin?
Hi my name is Ericka I am 26 years old and was blessed with my precious Royall on August 18. My son was diagnosed with Dravet syndrome in December, it has been a rough road expecially when you have no knowledge of it, but I am a women of strong faith and I highly believe
Our family lives in Georgia. I’m retired Army, and my husband is in the Reserves. My son is 8 years old. I enjoy crocheting and taking care of our mini farm. I have two other children who are 6 & 5. I also love hearing Matthew vocalize and laugh. When did Matthew’s seizures begin? Matthew’s
We live in New Mexico and we like to go camping and hiking as a family. When did Colton’s seizures begin? His seizures started at 5 months. He had multiple status seizures that lasted between 5 minutes and 2 hours, which is why he got genetic testing. What is your family’s hope for your future?
We live in Ottawa Ontario Canada. I am married with 2 daughters the younger one Zara has Dravet syndrome. Being all together brings us joy, we enjoy family dinners and playing at home. When did Zara’s seizures begin? 5 months old. The early days were very bad for my daughter she suffered with very bad
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