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2020 SRNA Quality of Life Family Camp

July 24 - July 26

Virtual Event

COVID-19 update as of July 17, 2020: 

Due to the COVID-19 pandemic, we and our camp partners, The Center for Courageous Kids (CCK), made the difficult decision to forgo all in-person events and bring our camp experience entirely online. While this is different and certainly doesn’t beat meeting in person, we hope this virtual camp experience will still be a welcome opportunity for you and your family! We encourage you to register and engage with one another and our medical professionals, and get a glimpse of the incredible fun CCK has to offer! For questions, additional information, or to be sure you’re on our email list regarding future camp opportunities, 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 Family Camp is going online, Friday, July 24 through Saturday, July 26, 2020! Be sure to register using the link below!

View the 2020 SRNA Virtual Family Camp Agenda here!

HOW DO WE REGISTER?

Start by completing SRNA’s Family Camp registration here! We’ll follow-up with you next week with the appropriate links, access codes, and instructions you’ll need to join in on the camp sessions!

Please note!:  We need you to use this form to register even if you previously applied to camp!  If you didn’t already sign up for a camp application with CCK late last or early this year, now’s your chance to join!

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 camp. Camp is open to families around the world.
  • Applications are welcome from older and younger children, who may be accepted on a case-by-case basis. If you are uncertain about your eligibility, please complete the registration form and we will be in contact with you if there are any questions!
  • Up to two adults living in the same household as the camper and the camper’s siblings 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.

WHAT IS THE COST?

There is no cost for families to join us!  Attend camp from the comfort of your own home!

EDUCATION PROGRAM

Medical professionals and specialists from our community will be attending camp and will be interactive 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 will also be available. All medical volunteers attending SRNA Virtual Family Camp have been invited by SRNA to join as volunteers and to participate in our program. The medical volunteers may share their experience and make recommendations, but will not be able to provide specific medical advice.

QUESTIONS?

Please feel free to contact us at any time for additional information or to learn more about our Family Camp!

Rebecca Whitney, Pediatric Programs Manager: rwhitney@wearesrna.org |Tel: 1-855-380-3330 ext 5

2020 SRNA Quality of Life Family Camp sponsored in part by  

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.

Details

Start:
July 24
End:
July 26

Details

Start:
July 24
End:
July 26