Alexion is a global biopharmaceutical company focused on serving patients with severe and rare disorders through the innovation, development and commercialization of life-transforming therapeutic products. Their goal is to deliver medical breakthroughs where none currently exist, and they are committed to ensuring that patient perspective and community engagement is always at the forefront of their work.
COVID-19 update as of April 24, 2020:
The health, safety, and well-being of our families is paramount in our decision-making process and we know CCK holds these same values. CCK has decided to cancel all of their summer camps for 2020. The SRNA fully supports this decision. We understand and value the time you’ve spent on the process of applications, physician statements, and the hopes you have of reuniting with camp friends and meeting new families. Please continue to reserve these dates of July 24-28, 2020, for an online camp experience! We will be working diligently with CCK, and our medical and community volunteers, to create a unique, memorable, educational, and worthwhile experience for you and your children. For questions, additional information, or to be sure you’re on our email list regarding our Family Camp opportunity, please email rwhitney@wearesrna.org. For more information and resources relative to COVID-19, please visit our COVID-19 page: https://wearesrna.org/covid-19/
SRNA is proud to offer a family camp for children diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM, and their family members. The camp provides a chance for children with rare neuroimmune disorders and their family members to experience the joys of camp and connect with others who experience the same symptoms and conditions.
We’re excited to announce SRNA’s partnership with the Center for Courageous Kids (CCK) in Scottsville, KY, will continue with our 2020 SRNA Family Camp scheduled to take place from Friday, July 24 through Tuesday, July 28, 2020!
Our SRNA pre-application is now live! If you’re not yet a member (required for camp attendance), be sure to join the association and also start on your 2020 Physician Statement (required by CCK as part of the application process).
Do you have questions about camp? Please email Rebecca Whitney, Pediatric Programs Manager, at rwhitney@wearesrna.org, with any questions you may have regarding our program!
SPONSORS
Our 2019 Quality of Life Camp was made possible through the generous support of the Christopher & Dana Reeve Foundation Quality of Life Grant, The Roles Family Foundation, The Rachel Williams Foundation, our members and a host of volunteer workers.
2020 SRNA Quality of Life Family Camp sponsored in part by
