CSS Conferences have been hosted annually each summer since 2016 in a different location in the US. Each conference has been organized by local hosts and sponsored by the Foundation. 

Conferences in Europe and Australia have happened at less consistent intervals with varying levels of Foundation support. 

We are thrilled to share our 2021 conference schedule! Scroll down for additional information and to enter the conference.

Important note: All times are listed in Eastern Daylight Time (EDT).

Day 1

April 30, 2021


All times listed in EDT.

3:30-4pm - Opening ceremony


4-5pm - Financial planning and trusts (Bobby Howell)


5-6pm - Panel discussion for parents new to the CSS community (hosted by Alyssa Cho)


7-8:30pm - Social event for CSS moms (hosted by Erin Berry)

Day 2

May 1, 2021

All times listed in EDT.

12-1pm - CSS medical update (Dr. Samantha Vergano)

1-2pm - Social event for kids with CSS (hosted by Karrah Wanagat)

2-3pm - Speech and non-verbal expression (Randi Freed, M.A., CCC-SLP)


3-4pm - Feeding challenges (Lyndsey Aston, M.A., CCC-SLP)

3-4pm - Social event for adults with CSS (hosted by Karrah Wanagat)


4-5pm - Panel discussion with adults with CSS (hosted by Karrah Wanagat)


6-7pm - Autism spectrum disorder (Amanda Pharris, BCBA, LBA, M.A., Ed.S)

7-8:30pm - Social event for CSS dads (hosted by Alex Beiger)

Day 3

May 2, 2021

All times listed in EDT.

1-2pm - IEPs (Jennifer Wayne-Weitz, JD)


2-3pm - Social event for siblings of individuals with CSS (hosted by Erin Berry)


3-4pm - CSS medical update (Dr. Samantha Vergano)


4:30-5:30pm - Panel discussion about puberty and adult life (hosted by Janice Gubbins)


6-6:30pm - Closing ceremony


Annual Summer Conference

If you would like to learn more about what it means to host the CSS Conference, please contact us.


2021 Conference

April 30 - May 2, 2021

We are excited to offer a conference format for 2021 that connects families, enables access to resources, and keeps families safe by way of virtual connection. This is our first virtual conference, and we appreciate the opportunity to connect with families from many locations across the United States and around the world. The theme of the conference is "true grit." 2020 was a trying year for all of us and provided many opportunities to show courage and strength of character. Every member of the CSS community, from patients to parents to other caregivers, lives with true grit and deserves to be honored. Thank you for taking this virtual journey with us as we celebrate you.

Now through May 16: In celebration of this year's conference, we have also opened an online pop-up shop where you can shop for CSS-related t-shirts and hoodies. All proceeds go directly to the Foundation. 

What: You are invited to the 2021 Coffin-Siris Syndrome Foundation virtual conference! The conference will provide an opportunity for you to connect with the global CSS community and learn from experts in fields relevant to the care of individuals with CSS. We plan to provide content related to CSS medical updates, autism spectrum disorder, feeding challenges, speech delays and therapies, IEP and financial planning, young adults/adults living with CSS, breakout sessions for moms/dads/siblings, and others. The keynote speaker is Dr. Samantha Vergano, who serves as a medical advisor to the Foundation’s board. 

Who: The content of the conference is specially designed for individuals with CSS, the family members and people who care for them, and medical professionals in the CSS community. All are welcome.


When: The conference will take place Friday, April 30 - Sunday, May 2, 2021. See the conference schedule above for more specifics.  Each session will last approximately 55 minutes, including 15-20 minutes for real-time questions and answers.


Cost and registration: The registration fee is $50 and includes attendance for all members of your immediate household. This ticket includes real-time access to all conference content and participation in live Q&A sessions and panels. There is an extra $10 fee for anyone living outside the continental US, to account for increased shipping costs of swag bag. For any questions about the conference, please email or visit our Facebook event.

Technical requirements: To make the most of your attendance, we recommend using a high speed internet connection to participate. In advance of the conference, you will receive specific instructions to log in and participate via Zoom.