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2020 SRNA Quality of Life Family Camp

July 24 - July 28

SRNA is excited to announce that our partnership with the Center for Courageous Kids (CCK) in Scottsville, KY continues with our 2020 SRNA Family Camp. Be sure to mark your calendars for Friday, July 24 through Tuesday, July 28, 2020, for the next annual SRNA Family Camp!

HOW TO APPLY?

Begin your application by completing the SRNA Family Camp Pre-Application here!

WHO IS ELIGIBLE?

  • Families with children diagnosed with ADEM, AFM, MOG-Ab Disease, NMOSD, TM, and ON who are 5 to 17 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 pre-application 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: https://wearesrna.org/join.

ARRIVAL AND DEPARTURE INFORMATION

Families will receive detailed information about arrival and departure times along with their acceptance confirmation directly from CCK. In general, most families arrive at camp around 3:00 pm on the first day of camp. Camp closes at noon on the last day of camp. The closest airport is Nashville, Tennessee. It is your responsibility to arrange for transportation to and from camp. Please do not make airline reservations until you receive an acceptance email or letter from CCK. CCK and SRNA are unable to offer transportation to and from camp.

WHAT IS THE COST?

There is no cost for families to come to camp beside personal travel expenses. SRNA and CCK have a partnership under which we cover the cost of camp. SRNA may be able to offer limited financial assistance based on need and eligibility, via travel grants to families. All accepted families will receive an email with an application form and guidelines to apply for this funding in early summer 2020, and when all of the camp spots are confirmed. Grant funds are disbursed as reimbursements and only once each of the grant requirements is met. All travel grant details will be included in the email to confirmed camp attendees in July 2020.

EDUCATION PROGRAM

Medical professionals and specialists from our community will be attending camp and provide a three-day education program for the parents and any of the children, teens, or young adults who attend camp and are interested in the education program. All medical volunteers attending SRNA Family Camp have been invited by SRNA to join as camp volunteers and to participate in an educational program during the camp. 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 28

Venue

Center for Courageous Kids
1501 Burnley Road
Scottsville, 42164 United States
+ Google Map

Details

Start:
July 24
End:
July 28

Venue

Center for Courageous Kids
1501 Burnley Road
Scottsville, 42164 United States
+ Google Map