| Thank you for an incredible year! As 2025 comes to a close, we honor the ongoing commitment that so many in our community have shown to the Coffin-Siris Syndrome Foundation. The Foundation exists to support the CSS community and to promote related research, and we couldn’t do this important work without you. We can’t thank you enough for your generosity. |
| Check out our 2025 highlights! – We sent over 120 Welcome Packets to families with a new diagnosis of Coffin-Siris Syndrome around the world in 2025. – We mailed CSS stickers and magnets to over 80 new homes worldwide. – 124 families, including 94 people with CSS and a total of 380 individuals attended the 2025 CSSF Conference in Denver, CO. – The CSS Foundation subsidized the cost of the conference for all attendees, and scholarships were provided to everyone who applied for one, for a total of 77 attendees. – Emily’s Fund provided AAC devices and hardware to 3 individuals with CSS and 3 AAC Boards to school and city playgrounds within our community. – Over 400 people joined us for 39 virtual events, including monthly self-advocate groups, sibling support groups, family and caregiver support groups, Q&A sessions with our medical advisors, and a webinar on autism and Coffin-Siris Syndrome. – We hosted the 3rd annual Wild about Inclusion Run Walk and Roll for CSS. The event brought together 29 teams, 222 donors, and 42 team members, who raised nearly $14,000 for the Coffin-Siris Syndrome Foundation. Thank you to everyone who joined us! – We sent 23 meals and care packages to families whose loved ones were sick or in the hospital. – 25 research articles were published on CSS. We continued to maintain updated research on our new website, also published in 2025: https://www.coffinsiris.org/programs Additionally, Dr. Vergano continued her work in clinical genetics at Seattle Children’s Hospital (SCH). The Coffin-Siris Syndrome IRB approved registry has over 540 participants from 18 countries around the world. This year the foundation funded a research assistant to continue the work of the registry, and created a subcommittee on research. Dr. Vergano saw 35 patients in the CSS clinic at SCH in 2025. The CSS registry has helped initiate research with Dr. Miller on CSS epigenetics, and Dr. Chen in sleep medicine. Additional projects in the works on seizures, ENT differences, and GYN anomalies. Dr. V looks forward in 2026 to implementing an ‘updated medical history’ function and other tools to optimize the important data shared on our CSS children, youth and adults. |
 |
| Thank you for all of the ways you have made this work possible, and continue to make this community what it is. As we celebrate these accomplishments, we also recognize those in our community who have had a hard year. We mourn with the families who have lost a loved one, worked to process a new diagnosis or fiercely faced yet another challenge. These moments remind us of our purpose. You all are the driving force behind everything the Foundation does, inspiring us to grow and expand our reach. The understanding and acceptance this community brings to our broader CSS family in times of need reminds us of our mission every day. We’re so thankful for everything our volunteers do to help fulfill our mission. Our Board members – Parrish Burgess, Amanda Cole, Becky Dubay, Simon Gale, Katie Kneisel, Kristen McGraw, Gaylen Mohre, and Carissa Robinson, keep things moving behind the scenes and bring the Foundation’s visions to life. Dr. Samantha Vergano, Dr. Tim Feyma, Dr. Gijs Santen, and Emily Place, give so much to our community, in-clinic and via their ongoing research. This year, we were excited to add Dr. Danny Miller as medical advisor. Brion Johansen and Shea Robinson serve as advisors to the Foundation. The Gubbins family, the Lynch family, the Pirie family, and the Alperstein/Minch family continue to sustain and grow the work of our self-advocates. We will be expanding our self-advocate board in 2026 and are looking forward to sharing their stories soon. We also thank the many volunteers that help with our conferences and other initiatives. This community could not be what it is without every one of you. We cannot wait to see what 2026 has in store for our community. Your year-end, tax deductible donation will make all the difference. Every gift counts, big or small. |
 |
| Here are some upcoming events from the CSS Foundation! Teens and Adults with CSS: Join our virtual group Monday January 12th, 2026 at 4pm PT. 5pm MT. 6pm CT. 7pm ET on Zoom! Teen and Adult Meet Ups in 2026 are open to any Teen and Adult with CSS and will be held the 2nd Monday of every month. They are co-led by our self-advocate advisory board members and Becky Dubay, our board member. Email becky@coffinsiris.org for more information and to register. Parents, Family Members and Caregivers: Join our virtual group Monday January 12th at 5:30pm PT. 6:30pm MT. 7:30pm CT. 8:30pm ET on Zoom! This group is facilitated by our board member, Becky Dubay. |
| Please save the date for the annual Coffin-Siris Syndrome Foundation conference, Thursday, July 23rd – Sunday, July 26th, 2026! Questions? Emailconference@coffinsiris.org As we wrap up the year, we want to thank you for your continued support! We wish you and your loved ones a very Happy Holiday season and a safe, healthy, and Happy New Year! |
Leave a Reply