Dravet Syndrome Foundation

Dravet Syndrome Foundation

Philanthropic Fundraising Services

Cherry Hill, NJ 2,156 followers

Raising Hope & Changing Lives through Research

Über uns

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families. We fulfill our mission through our four key programs: • Research Grant Awards • DSF Research Roundtable • IICEPR (International Ion Channel Patient Registry) • Patient Assistance Grant Program

Website
http://www.dravetfoundation.org
Industrie
Philanthropic Fundraising Services
Größe des Unternehmens
2-10 Mitarbeiter
Hauptsitz
Cherry Hill, NJ
Typ
Nonprofit
Gegründet
2009
Spezialitäten
Research, Awareness, and Advocacy

Standorte

Employees at Dravet Syndrome Foundation

Aktualisierungen

  • View organization page for Dravet Syndrome Foundation, graphic

    2,156 followers

    Mark your calendars for A Night of Bets for Bentley! ✨ Join us on Saturday, November 9, for an unforgettable evening of fun, fundraising, and a whole lot of heart. We’re celebrating and honoring 2-year-old Bentley Fish with casino games, raffles, and much more! Don’t forget to dress in your favorite country-inspired attire—whether that’s denim or pearls, we can’t wait to see you there! 🤠 Every dollar raised helps us get closer to a cure for Dravet syndrome. Don’t miss out on this opportunity to make a difference! Get your tickets today: bit.ly/4dX2ERf

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  • Shoutout to Jason & Meredith Bankston, Blaine & Shannon Cloud, Nathan & Whitney Batt, Ross & Polly Nicholas, Kevin & Brittany King, and Justin & Nicole Wright—the dream team who made our inaugural Betting on a Cure Atlanta Event a major success! 🎉 Because of your passion and dedication, we raised an incredible $231,008.08—144% of our $160,000 fundraising goal—to fuel our fight against Dravet syndrome. Your hard work isn’t just appreciated—it’s changing lives. A heartfelt thank you to all the families and friends of these dedicated committee members. Your support makes a real difference in the lives of those impacted by this condition. We are SO grateful! 💜

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  • We recognize the vital role that grandparents and extended family play in supporting those with Dravet syndrome. To help you connect and share your unique experiences, we’re excited to launch our first-ever virtual meetups just for grandparents and extended family. These sessions offer a safe space to connect with others, engage with DSF, and learn ways to better support your family and loved ones. 💜 The first session is this Thursday! Any extended family members are welcome to join. Click below to register for the upcoming sessions and receive the Zoom link! bit.ly/4d277AD

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  • A huge thank you to Donna DuBois for hosting the incredible "A Night for Nico" event on August 29! Thanks to her dedication and the amazing generosity of everyone who participated, we raised an outstanding $10,188.85! 💜 Your contributions make a real difference in our mission to fund life-changing research and provide critical resources to families impacted by Dravet syndrome. Every dollar raised brings us closer to a brighter future for those affected by this condition. Thank you for being part of this unforgettable night and helping us continue the fight against Dravet syndrome!

  • "Cael Hill is outgoing and curious. He loves to give hugs, to sing, and to make people laugh. He is fascinated by trains and animals. He loves movies and music. He also looks forward to hiking and exploring with his mom and dad." 💜 Cael’s story is one of courage, love, and unbreakable spirit. We’re honored that Happenings Magazine has shared his journey in their latest issue, shining a light on the daily challenges and triumphs that Dravet warriors like him face. 📖 Read Cael’s inspiring story on page 38 here: bit.ly/3AQSYJ3 🎗 Join us on September 15 for Steps Toward a Cure in Scranton, where we’ll walk together in support of Cael and all those fighting Dravet syndrome. Every step brings us closer to a cure. bit.ly/4dOV2ji Let’s show Cael and his family that they’re never alone on this journey. 🙌

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  • On November 3, six incredible athletes will represent Team DSF in the TCS NYC Marathon! 💜 These champions are running to raise funds and awareness for Dravet syndrome. From fathers to healthcare professionals, every runner has been inspired by someone living with Dravet syndrome, fueling their dedication to this cause. Join us in supporting Micah, Kerry, Susan, Danielle, Stewart, and Andrew! You can support their journey by donating through their individual fundraising pages or the team fundraising page! 🦋 bit.ly/3XvBhHW

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  • Shoutout to Shawna & Jeff Davis, Lynne & Elliot Howard, Sarah & Marcus Reyes, and Jen & Mike Shaughnessy—our dream team who made The 13th Annual Double Down for Dravet unforgettable! 🙌 Because of your passion and dedication, we raised an incredible $156,801.40—130% of our $120,000 fundraising goal—to fuel our fight against Dravet syndrome. Your hard work isn’t just appreciated—it’s changing lives. 💜 A heartfelt thank you to all the families and friends of these dedicated committee members for your unwavering support. You’ve made a real difference. bit.ly/3XR7hXt

    Double Down for Dravet

    Double Down for Dravet

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  • 💜 We know how important it is to have a doctor who truly understands Dravet syndrome. That’s why we’ve created our “Find a Doctor” tool—because every family deserves a healthcare provider who can offer the right support and guidance. If you’re searching for a specialist who gets what your Warrior is going through, this resource is here to help. If your doctor isn’t listed and would like to be, they can register to join the directory! You’re not alone in this journey, and finding the right doctor can make all the difference. Visit our website at the link in our bio to connect with experienced Dravet specialists near you. https://lnkd.in/gxQjNgSC

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  • A huge thank you to our Title Sponsor, Jim Ellis Automotive Group, for going all in and helping Betting on a Cure be set up for success! 💜 The generous support is helping us push the odds in favor of families affected by Dravet syndrome, funding critical research and resources. We couldn’t ask for a better partner in this fight. Thank you for believing in our mission and betting on a brighter future! 📆 Date: Saturday, September 7 🕡 Time: 6:00 PM - 11:00 PM 📍 Location: Jim Ellis VW Lighthouse, Atlanta, GA https://lnkd.in/gxCKVd2C

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