Reflecting on Our 2024 Quality of Life Family Camp
By Rebecca Whitney
In July of 2024, the fantastic staff and counselors of Morgan’s Camp welcomed our SRNA families, volunteers, and staff for another transformative event: The SRNA Annual Quality of Life Family Camp. Welcoming families from across the U.S. and Canada, our family camp is specifically organized by and for families of children diagnosed with rare neuroimmune disorders. This unique gathering is a blend of fun, learning, support, and community-building in a fully accessible environment–specifically focusing on our community’s children and those their diagnosis impacts greatly: their immediate family.
Our first year at Morgan’s in 2023 was one of our most memorable and rewarding camp events, and we could hardly wait to return! Many think the heat of a Texas summer is too much or would not be enjoyable, but it’s quite the contrary! The staff, programming, and accommodations at Morgan’s Camp and SRNA’s camp program, volunteers, and extraordinary families even give the Texas sun goosebumps! Morgan’s Camp is a phenomenal facility and was carefully chosen and secured to ensure maximum accessibility, safety, and a tremendous time for all involved! The location is easily accessible, just outside the San Antonio city limits and within a reasonable distance of the San Antonio airport.
Our families not only get accessible room accommodations (an accessible restroom in every stall? Unheard of! But not at Morgan’s!) but also enjoy activities they may not otherwise have access to: an adaptive climbing wall, a zero-entry pool complete with a lazy river and splash pad, a gorgeous gym including sports chairs for wheelchair basketball and perfect for hosting a carnival, all sorts of adaptive bikes, horseback riding, a zip line, challenge course, and more! There is an activity, game, or quiet space for every family member at Morgan’s–and when it’s time to cool off, refill a water bottle, or get a ride back to the cabin for a nap, Morgan’s and SRNA have our families covered!
Many of our kids have not considered climbing a wall or riding horses since their diagnosis. They may not have thought it was accessible, let alone possible. But we can make those aspects of being a kid at camp possible with Morgan’s. We can feel safe and seen in our children’s needs to truly participate in any camp activity. As parents, especially parents of one who has likely already been through far more than any human being should have to endure, we crave this safety, this community, and this acceptance for our children, even if we haven’t been able to articulate it. This safe space can be found for our children and for our hearts at camp.
Our time at camp also allows our community to engage with each other, see ourselves in other families, and realize we are not alone. The most remarkable aspect of camp is watching the connections and relationships form between parents, siblings, and the children themselves. To see oneself and find empathy and understanding in another individual or to see the fantastic future your child may still experience, regardless of their disability or diagnosis, in the smile and warmth of a former camper, now volunteer, or in the hope offered from a healthcare professional who knows the upcoming research scene, can be life-changing. Just as a diagnosis of a rare neuroimmune disorder changes the life of an entire family, our camp experience has the potential to be just as pivotal in a family’s life; it allows us to realize that we’re not alone, that others understand, and that there is still an abundant amount of joy that can be experienced after a diagnosis.
Another aspect of our camp is the opportunity for families to speak with not only our trusted and amazing medical professionals but also community members who volunteer their time at camp. Our medical professional volunteers work daily in their clinics and hospitals, caring for our families. They know and understand these disorders with a keen interest and an open heart and mind, acknowledging the fact that there is so much more to a child and their family than the short timeframe they may see them in their office. These interactions outside of the clinical setting open up an opportunity for more families to access the expertise of our specialized medical community but also for conversation about the concerns that impact our quality of life with our medical professionals. It provides an opportunity to engage with our kids and parents not only in a physician-patient relationship but as a parent-parent, friend-friend, and human-human. It opens up a viewpoint that is often forgotten in our relationships with our clinicians, but one that is so important to consider as we develop a plan of care for our children.
Our community member volunteers are all specifically chosen to be a part of camp, too. Each one has a unique story and perspective on life with a rare neuroimmune disorder. Whether they have been a camper in years past, diagnosed as an adult, experienced recurrent attacks as a child without a proper diagnosis, have a partner or child themselves diagnosed, or have listened to and captured the stories of our children and families, they inspire hope and joy. They lift up our families and support them because they too know what it means to be seen and heard by someone, by a family, by a community that understands.
Camp has a profound impact on so many, and it isn’t easy to describe just how palpable that impact is unless you can experience it for yourself. 2024 far exceeded expectations and when I thought 2023 couldn’t be topped, sharing smiles, hugs, tears, laughter and overwhelming emotions of simultaneous grief and pride alongside 23 families and their children, we managed to make it the best camp experience yet! Our camp family put on the most spectacular of talent shows, and everyone sang and danced to end our time together –– we didn’t want the night, or our week, to come to an end! Each year, but especially so after this year, I’m flooded with emotions and still cannot believe my own family is a part of this community’s story. None of us ever dreamed we’d be a part of a rare disease community or thought that as our child may have struggled to survive an acute attack, or when complications set us back into the hospital or rehabilitation, that we’d one day be watching them fly through the air on a giant swing or get up in front of their peers and karaoke alongside of others who know and love them for exactly who they are. Our camp families are a family.
Our camp program is the longest running program of SRNA. Sandy and Pauline Siegel set the standard when they ran their first children’s workshop in 2002. As an organization, we’ve adapted to changes in our society, economy, our growing families and community. 30 years after the start of a grass-roots organization happened at a kitchen table, we continue to raise the bar.
Camp cannot take place without the financial support of our community donors. Without their kind and generous financial support, and without the support of our individual donors, we could not make camp happen. It is a tremendous expense, as one can imagine, to secure a venue, plan, and bring together nearly 200 people from around the world to be “family” for a week. But SRNA is committed to making this experience for our children and their families, at minimal cost, and we are tremendously grateful to our supporters.
Given our 2024 families’ positive response at camp and top-notch experience, we’ve already secured our dates with Morgan’s Camp for next year; the planning has commenced! We hope your family will “Save the Date” for next year’s Quality of Life Family Camp, Sunday, June 29 through Thursday, July 3, 2025! We’ll be sharing news, updates, and most importantly, notify you all when applications will open, in the coming weeks and months (applications will likely open in December, so you have time to decide if the dates will work!). Be sure to stay tuned to your email inboxes, and our social media accounts! The best way to know when applications open is to sign up for our emails. If you haven’t already done so or are uncertain if you are subscribed to receive all of our emails, you can update your info via this link.
We hope that you are able to join us at next year’s camp. Whether this is a moment to reunite with your “family” or experience camp with us for the first time, we welcome you.
Thank you to our 2024 SRNA Quality of Life Family Camp sponsors!
