We are proud to share the significant achievements and inspiring stories from last year that underscore our commitment to supporting families affected by SCN8A-related conditions. We continue to foster a strong and supportive community through innovative fundraising, impactful volunteer efforts, informative educational series, and groundbreaking research initiatives. These highlights illustrate how, together, we are making meaningful strides toward a better understanding of SCN8A and an enhanced quality of life for our loved ones. Join us as we celebrate our collective accomplishments and look forward to another year of progress and hope.
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The Pitino family's Comedy Fundraiser raised over $62,000, which helped fund 19 family travel grants for the 2022 Annual Gathering in Nashville, Tennessee.
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The SCN8A Family Support Group expanded to over 400 members across more than 40 countries, illustrating the foundation's global reach and the commitment to supporting families affected by SCN8A-related conditions.
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The 2022 CUTIES Award was presented to Hillary Savoie, the foundation's founder, in recognition of her tireless advocacy and significant contributions to the SCN8A community.
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Volunteer Highlight"Volunteering for TCSF has been so healing for me. It really gave me the opportunity to get to know our SCN8A peers on a deeper level. I know what it feels like to drown in a diagnosis. If my time can raise money and awareness for these kids or help a family feel less alone or isolated, then it’s worth it!”
Heather Crowley
Tate’s Mom |
The Rare Epilepsy Partnership Award was granted to Dr. Jillian McKee for a project aimed at understanding the natural history and genetics of SCN8A-related disorders, which is fundamental for improving clinical care and designing targeted therapies.
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Our Clinical Trial Readiness Series and Meaningful Change Series, along with educational workshops like Cheers to a Good Life, provided crucial updates on clinical trials and research developments, along with targeted support and planning tools, advancing treatment options like PRAX-562 and enhancing long-term care strategies and quality of life for individuals with SCN8A.
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The Virtual Silent Auction, spearheaded by volunteer Danielle Hayward and SCN8A sibling Trinity Young, raised nearly $5,000. This event highlighted the strong community support and the effectiveness of innovative fundraising efforts.
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Past PCDH19 Efforts Privacy Policy The Cute Syndrome Foundation PO Box 842 Ozark, MO 65721 |
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