Saturday June 23rd is Dravet syndrome awareness day!
Dravet syndrome is a rare genetic dysfunction of the brain (epileptic encephalopathy). It begins in the first year of life in an otherwise healthy infant, and it is lifelong.
Common issues associated with Dravet syndrome include:
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Prolonged and frequent seizures
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Behavioral and developmental delays
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Delayed language and speech issues
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Growth and nutrition issues
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Sleeping difficulties
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Chronic infections
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Disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
Click here to read more about Dravet syndrome.
So here are a few helpful tips and resources, courtesy of the Dravet Syndrome Foundation (DSF)!
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Join a support group
The DSF Family Network is a program that gets patients and families together to share local updates regarding doctors and therapy options, information on local events and fundraisers, and resources that are available in your state and region.
Click here to learn more and see what’s available in your area!
2. Participate in a fundraiser
DSF offers several established fundraising programs throughout the year – or you can set up a personal fundraising campaign with your own fundraising page that will feature your story and why you support the work of DSF.
Click here to learn about the ways you can help raise funds for the Dravet community!
3. Be active on social media
It’s a 21st century world! Whether you use your own social media to raise awareness, or connect others in the Dravet community to these pages, social media is such an important communal hub.
So whether you’re more active on Facebook, Twitter, Instagram, or Youtube– visit these pages and see how you can help!
4. Dravet Syndrome Foundation’s 2018 DSF Conference
Check out our article on the 2018 conference!
This three day conference brings together caregivers, medical professionals, and families to network and learn more about research, treatments, and day-to-day disease management.
