White text with a zebra stripe pattern that reads "KEEP MOVING FORWARD" is in the foreground, with smaller white text below it stating "COFFIN-SIRIS SYNDROME FOUNDATION 2026 WALK, RUN & ROLL" against a black background.

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Keep Moving Forward: 2026 CSS Walk, Run &amp; RollWe’re thrilled to announce the 4th Annual 2026 CSS Walk, Run &amp; Roll! Our Keep Moving Forward fundraiser, taking place October 17-18, 2026, will raise awareness of Coffin-Siris Syndrome and support the essential work of the Coffin-Siris Syndrome Foundation.  Help us move forward – together!  🦓 In true zebra spirit, our annual Walk, Run &amp; Roll event is a bit different from traditional fundraisers. Once you register, you’ll receive a fundraising link for your team that you can share with your own network on social media, email, through work, etc. Then, you can walk, run, or roll however works best for you, any time the weekend of October 17-18! There is no donation required to participate. <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1789130646/wysiwyg/g3xho0gas0gztianbnzc.jpg" style="width:600px;display:block;vertical-align:top;margin:5px auto;text-align:center;padding:0px 1px;max-width:100%" /> How this event advances our mission:  The CSS Foundation was established in 2017 to connect, support, and inform the CSS community and to promote and fund related research. All funds raised will support the following programs:    🌟 Community Connections: We host monthly virtual Q&amp;As with our medical advisors, parent and sibling support groups, as well as in-person events, including our annual conference, attended by over 500 CSS community members this last July. The Foundation provides information packets to newly diagnosed families, and sends free stickers and magnets internationally, to anyone who requests them!  🌟 Support and Self-Advocacy: With your support, we send meals and care packages to families whose loved ones are hospitalized. Through Emily's Fund, we provide AAC devices for communication and AAC playground boards for schools in our communities. Our Board includes a group of young adult self-advocates with CSS and we host virtual and in-person events for teens and adults with CSS. 🌟 Research and Registry:  We partner with our medical advisors, including Dr. Samantha Vergano, who cares for patients at the CSS clinic, now located at the Seattle Children’s Hospital, in Seattle, WA. We fund clinical research as well as the patient registry, a clinical database that aims to understand the growth, development, medical issues, and ongoing management for people with CSS. Not interested in registering a team? That’s OK! You can still support this event by donating and/or sharing links from other participants.  You can also purchase a shirt or hoodie to support the event. Order by Sept. 23 to receive them in time for Walk, Run &amp; Roll weekend!  <a href="https://www.bonfire.com/keep-moving-forward-59/" target="_blank">Bonfire Store for T-Shirts and Hoodies</a> Questions? Contact Foundation@coffinsiris.org THANK YOU for all that you do to keep our rare community moving forward!

Keep Moving Forward 2026 CSS Walk, Run & Roll

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Join our crew at the Disability Pride Parade on October 18 in NYC! Keep Moving Forward: 2026 CSS Walk, Run &amp; RollWe’re thrilled to announce the 4th Annual 2026 CSS Walk, Run &amp; Roll! Our Keep Moving Forward fundraiser, taking place October 17-18, 2026, will raise awareness of Coffin-Siris Syndrome and support the essential work of the Coffin-Siris Syndrome Foundation.  Help us move forward – together!  🦓 In true zebra spirit, our annual Walk, Run &amp; Roll event is a bit different from traditional fundraisers. Once you register, you’ll receive a fundraising link for your team that you can share with your own network on social media, email, through work, etc. Then, you can walk, run, or roll however works best for you, any time the weekend of October 17-18! There is no donation required to participate. <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1789130646/wysiwyg/g3xho0gas0gztianbnzc.jpg" style="width:600px;display:block;vertical-align:top;margin:5px auto;text-align:center;padding:0px 1px;max-width:100%" /> How this event advances our mission:  The CSS Foundation was established in 2017 to connect, support, and inform the CSS community and to promote and fund related research. All funds raised will support the following programs:    🌟 Community Connections: We host monthly virtual Q&amp;As with our medical advisors, parent and sibling support groups, as well as in-person events, including our annual conference, attended by over 500 CSS community members this last July. The Foundation provides information packets to newly diagnosed families, and sends free stickers and magnets internationally, to anyone who requests them!  🌟 Support and Self-Advocacy: With your support, we send meals and care packages to families whose loved ones are hospitalized. Through Emily's Fund, we provide AAC devices for communication and AAC playground boards for schools in our communities. Our Board includes a group of young adult self-advocates with CSS and we host virtual and in-person events for teens and adults with CSS. 🌟 Research and Registry:  We partner with our medical advisors, including Dr. Samantha Vergano, who cares for patients at the CSS clinic, now located at the Seattle Children’s Hospital, in Seattle, WA. We fund clinical research as well as the patient registry, a clinical database that aims to understand the growth, development, medical issues, and ongoing management for people with CSS. Not interested in registering a team? That’s OK! You can still support this event by donating and/or sharing links from other participants.  You can also purchase a shirt or hoodie to support the event. Order by Sept. 23 to receive them in time for Walk, Run &amp; Roll weekend!  <a href="https://www.bonfire.com/keep-moving-forward-59/" target="_blank">Bonfire Store for T-Shirts and Hoodies</a> Questions? Contact Foundation@coffinsiris.org THANK YOU for all that you do to keep our rare community moving forward!

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