It was wonderful to see so many of you last Friday at our CS webinar! Many thanks to all who attended, it was a great opportunity to come together, to share the research being done here at Brown University, and to hear from families about your experiences and concerns.
I know some of you were not able to attend the webinar, so we would like to share with you a recording of the presentation. You may access the recording here: https://www.youtube.com/watch?v=tMQ1sdZb9C8.
We have translated subtitles available in several languages. Please click on the button at the bottom of the screen that says “CC” and then use the settings button next to that pull up language options for closed captioning language options:
If you would like to read the full paper that was presented, you may access the paper here: Christianson syndrome across the lifespan: genetic mutations and longitudinal study in children, adolescents, and adults | Journal of Medical Genetics.
For those of you who indicated on your conference registration that you would like to be contacted by the research team, we will be in touch with you soon. You may feel free to reach us at this email address as well (CSNetwork@brownhealth.org).
Thank you for your ongoing support! It is truly a privilege to do this work with our families, and we appreciate your many contributions to help us advance CS research.
If you have any questions for the research team, please be in touch!
Sincerely,
Carrie Best on behalf of the CS Network study team
On May 25, 2019, the Brewster family held their 3rd annual walk benefiting CSA. This was their second year to have the mayor declare May as CS Awareness month in Bryant, AR! The mayor and his wife attended the walk this year. The walk was at Mills Park, which is now an accessible park. The Brewsters always have a laid-back walk, where people can come, have some snacks, walk as long as they want on the nature trail, and play on the playground or just hang out and talk.