Dravet Syndrome Foundation

@curedravet

The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families.

Cherry Hill, NJ
dravetfoundation.org
Joined September 2009
609 Photos and videos Photos and videos

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  1. 14 hours ago

    Save the Date - Feb 16 at 7pm ET - and hear our Executive Director join in a discussion about syndrome and Lennox-Gastaut syndrome hosted by the Epilepsy Foundation.

    Join Epilepsy Foundation of America for a Facebook Live on February 16 at 7 p.m. ET with Dravet Syndrome Foundation's Executive Director Mary Anne Meskis and Lennox-Gasaut Syndrome Foundation's Executive Director Tracy Dixon-Salazar PhD. Save the date:
    1 reply 8 retweets 15 likes
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  2. 20 hours ago

    For , is hosting a webinar this Thursday at 5pm ET to help caregivers learn more about and how to start developing an individualized action plan. Register now:

    2 retweets 11 likes
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  3. Retweeted
    Feb 9

    Discussing stressful topics like with caregivers/patients is difficult for . A recent CME-accredited webinar with Joe Sullivan and LCSW Ashley Wood covers best practices for discussing difficult topics with families. Find it here:

    2 retweets 9 likes
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  4. Feb 9

    Learn why Seizure Action Plans (SAP) are vital to keeping patients with epilepsy safe! Thank you , Dr. Orrin Devinsky, and for talking about SAPs!

    Today marks the first day of Seizure Action Plan Awareness Week ! We collaborated with , , , and epilepsy leaders to discuss the major topics regarding SAPs. Why are SAPs important? Click below ⬇️
    5 retweets 12 likes
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  5. Retweeted
    Feb 9

    Nationwide, 470,000 children & teens have been diagnosed with epilepsy, and yet only 45% of pediatric patients have a seizure action plan. Having a plan in place can save lives. ❤ Visit . This effort is supported by and .

    6 retweets 12 likes
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  6. Feb 9

    announced a new website for DIACOMIT () that includes resources for families navigating syndrome at every age, information to guide , and details about Patient Access Programs.

    1 retweet 2 likes
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  7. Retweeted
    Feb 8

    Today (Feb 8) marks the beginning of Seizure Action Plan Awareness week. EVERYONE with seizures should have an action plan! Spread the word!! 📢

    1 reply 11 retweets 41 likes
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  8. Feb 8

    Are you ready for a seizure emergency? Join us in raising awareness of the importance of seizure plans during Seizure Action Plan Awareness Week! Thank you and for your support of this important initiative.

    13 retweets 23 likes
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  9. Feb 5

    The 1st annual Seizure Action Plan (SAP) Awareness Week kicks off on Mon, Feb 8. Check out this week's Decoding blog to learn how you can help! Thanks to and for supporting this educational initiative!

    1 retweet 9 likes
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  10. Feb 2

    ’s policy is a vital safeguard for beneficiaries living w/ serious conditions like syndrome. We stand w/ the epilepsy community & call on the Biden Administration to reverse course & protect this key policy.

    Together, the epilepsy community calls on the Biden Admin to rescind a harmful demo that would limit access to anticonvulsants for 1.1 million beneficiaries living w/ the epilepsies. Read the statement: .
    5 retweets 7 likes
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  11. Feb 2

    The Coalition behind - , & - are proud to announce the inaugural Seizure Action Plan Awareness Week Feb 8-14! This effort is supported by & Learn more:

    7 retweets 29 likes
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  12. Feb 2

    Amazing!

    For the fans - an update. Now 120 days after transplant and still happily seizure-free |
    2 likes
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  13. Feb 1

    We couldn’t ask for better researchers and clinician fighting alongside us - thanks for your drive and dedication to the community!

    So proud of my lab and this work.
    3 retweets 12 likes
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  14. Retweeted
    Feb 1

    The Seizure Action Plan Coalition, including the , & , are proud to announce the inaugural Seizure Action Plan Awareness Week February 8-14! Learn more: This effort is supported by & .

    6 retweets 16 likes
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  15. Feb 1

    DSF in collaboration with and announces the launch of the Seizure Action Plan (SAP) Coalition website: Be prepared for a seizure emergency! Thank you and for your support.

    6 retweets 18 likes
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  16. Feb 1

    Thank you for adding a sleep specialist and neuropharmist to your Genetic Epilepsy Program - comprehensive care is what the community desperately needs!

    Sleep problems are common in with > 75% of parents reporting issues. This year we’ve added sleep medicine to our comprehensive clinic! 💤 ⁦⁩ Genetic Epilepsy program expands with sleep specialist and neuropharmacist | The Arcuate
    12 likes
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  17. Jan 29

    Knowledge of can empower families to take preventative measures, participate in , and contribute to aimed at ending SUDEP. discusses this important topic in this week's blog.

    2 retweets 19 likes
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  18. Retweeted
    Jan 21

    Join us for our upcoming webinar on Feb. 10! We are discussing: -Age-appropriate strategies for managing difficult behavior -Tools and techniques for better understanding your child’s behavior -Approaches to help stop difficult behavior before it starts

    2 retweets 3 likes
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  19. Retweeted
    Jan 23

    Joe Sullivan MD has led yet ANOTHER 🤓 study looking closely at the new med fenfluramine for . Q: How many patients are likely to have 50-75% LESS convulsive per month? A: About 1 in every 2 to 3 treated

    5 retweets 22 likes
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  20. Retweeted
    Jan 23

    FYI:

    2 retweets 3 likes
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