During this month, the Dravet Syndrome Foundation (DSF) organizes a variety of activities and resources to help raise awareness for Dravet syndrome, a rare form of epilepsy. They make it easy for anyone to join in and help to support those affected by this rare disease.
About Dravet Syndrome
First thing’s first, we should get a better understanding of what Dravet syndrome is. If we’re going to be advocating for people affected by it, we should at least know the basics. Dravet syndrome is a form of epileptic encephalopathy. Symptoms typically begin within the first year of life, and they are non-febrile and prolonged febrile seizures. As time passes, the seizure type may change and other symptoms may appear. Examples include partial seizures, myoclonic seizures, ataxia, cognitive impairment, psychomotor delay, motor deficits, and behavioral disorders. In the majority of cases, a mutated SCN1A gene is responsible.
Dravet Syndrome Awareness Month
With the theme of Raising Public Awareness, this month is all gearing up for International Dravet Syndrome Awareness Day, which is celebrated on June 23rd. This theme is extremely important, as awareness is the first step towards improvements in research, diagnosis, treatment, and support for those affected by Dravet syndrome. A large focus is on diagnosis and ensuring that it happens as early as possible. Early intervention yields the best outcomes for patients.
Here are some of the events and ways you can get involved:
- Tune in to Lifetime TV on June 13th at 7:30 AM Eastern Standard Time to watch “The Balancing Act Presents Behind the Mystery of Dravet Syndrome.” It details the life and journey of Kaylee Raia, a Dravet syndrome patient
- June 15 marks the DSF’s Remembrance Day, which memorializes those who have passed away from this rare disease
- You can submit your loved one’s name to the DSF here for their Remembrance Wall
- Open a personal fundraiser page to help raise money for the DSF, its research, and its programs
- You can share posts, stories, and more on social media
- Use the hashtag #curedravet
- The DSF offers tips to make your storytelling more effective if that’s what you want to share on social media
- For those in the Dravet syndrome community in the UK, here are some specific resources for you from Dravet Syndrome UK
- There’s a wall of remembrance dedicated just to UK patients, and you can submit your loved one’s name here
At the end of the day, there are so many ways for you to get involved in raising awareness for Dravet syndrome. Dravet Syndrome News details even more in their article.