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.
Update as of January 2022:
We’re excited and look forward to returning to The Center for Courageous Kids (CCK) once again this summer! Families, mark your calendars for family camp to return to CCK, July 26 – 30, 2022!
Please Note!:
- Appropriate COVID-19 safety protocols will be followed and required by both CCK and SRNA. These safety protocols will be made available when applications are reviewed and you receive an invitation to camp. For more information and resources relative to COVID-19, please visit our COVID-19 page.
- Compliance with COVID-19 safety protocols for all campers and families will be mandatory. As the situation continues to change, CCK and SRNA will review with the public health and medical and scientific council. We may update safety measures accordingly, and reserve the right to request families and children adhere to these measures. Families accepted to camp will be notified of updates or changes.
- CCK and SRNA also reserve the right to cancel camp, notifying families accordingly, if it is deemed unsafe to gather in-person. Appropriate communications will be sent should this need to happen. Please do not make any travel arrangements to CCK until you have received confirmation of your application review and a formal invitation from CCK and confirmation of your RSVP.
- SRNA membership is a requirement to apply and attend family camp. If you are not yet a member of SRNA, please join here. Please also be sure to sign-up to receive email and blog announcements to ensure you receive notifications when our camp application opens!
- The camp application is a two-step process. You must apply with SRNA prior to completing CCK’s application. Please read below to begin your application process.
- Space at camp is limited to a maximum of 30 families; 15 for previous attendees, and 15 for new to camp attendees. Applications will be reviewed and confirmed by CCK with an invitation to families. Camp applications must be completed in the appropriate order, and be complete before they will be considered for review. There will not be room-sharing options available this year.
HOW DO WE APPLY?
Start by completing SRNA’s Family Camp Pre-Application here! We’ll follow up with you with additional information, and instructions you’ll need to continue the application process! The pre-application form must be completed prior to completing CCK’s CampDoc application, even if you’ve previously attended camp.
WHO IS ELIGIBLE?
- Families with children diagnosed with ADEM, AFM, MOGAD, NMOSD, TM, and ON who are 0 to 20 years old are eligible to apply to SRNA’s family camp. Camp is open to families around the world.
- Due to ever-changing COVID-19 travel restrictions, we recommend visiting the U.S. State Department website if you plan to travel from outside of the U.S. (this includes those who may travel from Canada).
- Up to two adults and the camper’s siblings living in the same household as the camper may participate in camp.
- All applicants must be members of SRNA. Membership is free. If you are not a member, please complete the membership form prior to completing the pre-application.
- If you are uncertain about your eligibility, please complete the pre-application form and we will be in contact with you if there are any questions!
WHAT IS THE COST?
There is no cost for families to attend camp other than your own costs to travel to and from CCK, including lodging and meal expenses you may incur during your travels.
EDUCATION PROGRAM
Medical professionals and specialists from our community will be attending camp to interact in our Q&A sessions. The Q&A sessions are for the parents and any of the children, teens, or young adults who attend camp and are interested in connecting with the experts in the rare neuroimmune disorders. Closed sessions for just campers (those with a diagnosis) and separate sessions for their siblings may also be available. All medical and professional volunteers attending SRNA Virtual Family Camp have been invited by SRNA to join as volunteers and to participate in our program. The medical and professional volunteers may share their experience and make recommendations but will not be able to provide specific medical advice.
QUESTIONS?
If you have any questions or require additional information, please email [email protected] or, call or text Rebecca Whitney, Associate Director, Pediatric Programs, at +1 (513) 449-0495. We can’t wait to see you in person at CCK in July 2022!
SPONSORS
2021 SRNA Quality of Life Family Camp was sponsored in part by
