Looking Forward to 2022 Quality of Life Family Camp

We are a little over two months away from one of our most highly-anticipated events of the year: SRNA’s Quality of Life Family Camp. After two years being virtual, we are excited to connect with children and their families in person once again at the Center for Courageous Kids in Kentucky.

“Our camp represents a fantastic opportunity for families and children to meet and spend time with others with these diagnoses. It’s an opportunity to connect with those who understand; to see someone who walks with a similar, unusual gait pattern; to see others use the same equipment; to see they’re not the only one with visible scars from surgeries. It’s a chance to connect with just a look from another that confirms they know the silent pain of an “invisible disability” – a look between peers, parents, siblings, that says, “I’ve got you.” There’s power in connecting through our shared experiences, and although these experiences can be horrifying, we take comfort in knowing we’re not alone on this road.” – Rebecca Whitney, Associate Director of Programs and Community Support

In 2019, our camp brought together families diagnosed with each of the disorders we advocate for. Approximately half of our families previously attended camp, and the other half were new to the experience. We hope you’ll consider supporting the camp and our families, spreading the word to others who may benefit from the program, or joining us as an attendee.

If you or a loved one plan on attending our 2022 Quality of Life Family Camp, please be sure to fill out an application as soon as possible as registration is limited. Full camp details and registration information can be found here.

Want to learn more about our 2019 camp experience? Read all about it in our Fall 2019 issue of the SRNA Magazine.

Announcing the 2022 SRNA Quality of Life Family Camp!

The Siegel Rare Neuroimmune Association (SRNA) is excited to announce that our partnership with the Center for Courageous Kids (CCK) in Scottsville, KY continues with plans to return in-person for our 2022 SRNA Quality of Life Family Camp. Mark your calendars for Tuesday, July 26 through Saturday, July 30, 2022, for the next annual SRNA Family Camp!

Our annual Quality of Life Family Camp is open to families of children, ages 0-20, diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. The children diagnosed, together with their parent(s)/guardian(s) and their siblings, are welcome to apply to attend camp. Camp is a unique opportunity for our children and their families impacted by one of the rare neuroimmune disorders to experience the joys of a traditional summer camp (think fishing, boating, arts & crafts, and more!), all while connecting with others who may understand what it means to live with one of the diagnoses, and have an opportunity to receive updates from and ask questions of the medical and scientific professionals who specialize in these rare disorders. Please visit our website for more details regarding eligibility here. If you yourself aren’t eligible for camp, please consider sharing the information with a family you may know who would love the opportunity to connect further with our community via camp!

Applications have officially opened, and eligible families may begin the application process by first completing our SRNA Pre-Application. After completion, an SRNA staff member will email the pre-applicant within (2) business days with additional details regarding camp, the formal CCK application link, review, and acceptance process. Remember, you must complete the pre-application first before the CCK app, but it isn’t the only part of the process!

Please contact Rebecca Whitney, Associate Director, Pediatric Programs, via email, [email protected], text, or phone, +1 (513) 449-0495, if you have any questions related to camp or the application process.

We look forward to seeing new and returning families at camp this summer!

The SRNA Quality of Life Family Camp is sponsored in part by

The Roles Family Foundation

Announcing SRNA’s 2020 Virtual Quality of Life Family Camp

Every year, SRNA holds a summer camp for kids diagnosed with a rare neuroimmune disorder and their families. Although this year’s camp will be a bit different, we are still committed to hosting this experience for the families in our community. SRNA’s Virtual Quality of Life Family Camp will be held online, Friday, July 24, through Sunday, July 26, 2020. This special virtual camp is for families with children diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. You may view the camp schedule here!

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 our families! We encourage all parents and guardians who are interested to register and ask questions, engage with one another and our medical professionals, and get a glimpse of the incredible fun CCK has to offer!

Various sessions will be held through the three days and will vary in topic and audience. Families’ active participation will enrich the online camp experience for everyone! We sincerely hope to be joined by as many families as possible, to hear from others in our community, share experiences, and ask questions of the experts. Families will still be able to greet old friends and create new friendships through the interactive sessions. Registering with us now will grant access to CCK’s online camp content created especially for our SRNA Family campers. These separate video sessions will be sent directly by CCK to you the week following our online camp.

Interested in joining SRNA’s Virtual Quality of Life Family Camp?

To register, please fill out this formPlease 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! SRNA membership is required to register and attend virtual camp. If you are not yet a member of SRNA, please do so here. Once you register for camp, we’ll follow up with you with the next steps to register for the Hopin platform we will be using, and instructions on how to access the private sessions!

Our camp sessions will not be recorded or available later, so please be sure to join the sessions when they are live.

Complete the registration, submit your questions, and we’ll see you next week!

Announcing the 2020 SRNA Quality of Life Family Camp

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, MOGAD, 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: [email protected] |Tel: 1-855-380-3330 ext 5

SRNA Brings Hope

By Jessica Schwartz

My daughter, Ivy, and I were thrilled when we found out that we would be attending the Siegel Rare Neuroimmune Association’s (SRNA) Quality of Life Family Camp. This was our first year attending, and we were both so excited to meet families like ours. We started out our “girls trip” early in Nashville, TN before heading to camp. We had a lot of fun being tourists.

I have tried but haven’t been able to find the words to describe our experience at the Center for Courageous Kids (CCK). The staff and volunteers with CCK and SRNA are the reason this camp is so memorable. They made sure all of the families had what they needed and were always willing to lend a helping hand to make it easy for us to do all the activities. I’m used to having to leave activities early so I can tend to Ivy’s medical needs, but the counselors handled all of that, so I didn’t have to worry. We got to meet so many families and children that battle with the same issues as we do. I often feel alone but have found many parents that I can now lean on for support and guidance. They had education sessions for the parents so that we could talk with specialists and share our concerns and help guide us in the right direction of care.

Watching my daughter and the other children encourage and support each other was heart-warming. Ivy got to try new activities that we don’t get to do at home. She loved fishing and boating, and when she got too hot, we would find ourselves inside doing crafts or learning to cook something new. We had a blast during the family Messy Games. Ivy stepped out of her shell and participated in the talent show with some of her favorite counselors. Transverse myelitis comes with a list of hardships and difficulties, but it doesn’t compare to the amazing people that we have met during this journey. Ivy is my TM warrior, and she’s already making travel plans to visit her new friends that she met at camp!

Snapshots of the 2018 SRNA Quality of Life Family Camp

Every summer, SRNA hosts our Quality of Life Family Camp at the Center for Courageous Kids (CCK). Kids aged 5 to 18 and their families come to Kentucky to enjoy an accessible camp experience. This summer, we had a record 35 families attend camp! Here are some of their experiences, in their own words.

“The week at CCK was filled with compassion, connection, and kindness. Even though the event was our family’s first experience with SRNA, we felt an immediate connection to the community built around a severely life-impacting disease. For the first time since our son’s event, we met others who were affected by ADEM, which was emotional to say the least. The entire community breathes compassion and a welcoming expression of, “we know what you’re going through and it’s going to be okay, we got you.” Every activity was meant to build an opportunity to interact and build a conversation around life outside of the camp, with a sense of kindness.”

            – Tim Smart, father of Tim Jr.

“This was our first time to visit Camp for Courageous Kids. It was everything we hoped it would be and more. The camp was absolutely beautiful, and the staff was amazing. SRNA Family made us feel welcomed and a part of the family. It was an experience of a lifetime to be able to talk to other families and listen to their stories. Hailey woke up each morning ready for a new adventure. It was a joy to watch the children play, enjoy life, and just be free to be themselves. The educational sessions for the parents were very informative. We thoroughly enjoyed camp and the friendships that we made during our stay.”

            – Shea Abraham, mother of Hailey

“Our son Austin has Acute Flaccid Myelitis. He has dealt with a lot of trauma over the past two years since being diagnosed. From being in a hospital for 6 months, numerous surgeries, never-ending therapy and appointments. He has overcome a lot, and it was great to see him have so much fun with the counselors and friends he made. His little brother was right in the middle of all the fun! My husband and I were able to visit with other families who have been going through the same struggle our family has endured. We gained knowledge and insight from the physicians and staff who were there to answer questions and guide us in the right direction for Austin’s needs. The whole experience while being at camp was amazing and we appreciate everyone who made it possible!!”

            – Michelle Daniels, mother of Austin

“Words cannot even begin to describe how amazing this was for all five of us. This past year has been very difficult for all of us, with Kyler’s diagnosis of Transverse Myelitis. The week of camp, Kyler was able to meet and interact with kids who have the same or similar disease. This was so nice for him to be able to play with other kids and not have to explain his disability, because all the other kids have dealt with similar struggles because of this terrible disease. It was amazing for Hailey and Khloe to meet siblings who are going through the same kinds of daily issues as the siblings of a child battling TM. Curt and I were able to learn so much from other parents and doctors who specialize in helping children with TM. They graciously answered our many questions and shared their experiences with us. We have so much support here at home, but this week it was so nice to be among other parents who truly know what we deal with daily and know exactly how we feel.”

            – Danielle Baldwin, mother of Kyler

If you are the parent or guardian of a child who is diagnosed with acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis, or transverse myelitis, you can receive updates on next year’s camp by becoming a member of SRNA! Join here: https://wearesrna.org/join/.

Feeling Good at SRNA Quality of Life Family Camp

By Jeremy Bennett, Community Partnerships Manager at SRNA

“CCK! How do you feel?”

If everyone around is staring at you now because you just spontaneously yelled, “we feel so good” and started clapping in rhythm, chances are you’ve been to SRNA Quality of Life Family Camp. If you haven’t been to camp at The Center for Courageous Kids and you have a child diagnosed with a rare neuroimmune disorder, keep reading to learn why this is one of our favorite weeks of the year, and start making plans for 2019!

Last fall, I joined the Transverse Myelitis Association as the Community Partnerships Manager. One of my first weeks on the job was during the Rare Neuroimmune Disorders Symposium. I met so many members and their families. One of the topics that came up the most that weekend was Family Camp. People wanted to know what it was, when it was, and how they could attend. Everyone (SRNA staff included) talked about it with a certain energy that is seldom seen in adults; a throwback to those nights before holidays where the anticipation makes it impossible not to smile.

I spent the next nine months wondering if the actual experience could live up to the expectations. I am happy to report I was not disappointed. In fact, my five days at camp exceeded everything I had hoped it would be. We often talk about how many of the people diagnosed with one of these disorders don’t know any else diagnosed with their same disorder, so it was amazing to watch these thirty-five families interact.

There was a look of recognition and comfort from many of the parents attending for the first time. There was also joy as they watched their kids dance, fish, ride horses, shoot watermelons with a bow and arrow, and just play. And then there was Messy Games! Remember that energy I mentioned earlier? It was in full force as parents, kids, and staff dumped green oatmeal, chocolate pudding, and other “messy” stuff on each other. A special shout-out to our clinicians and James T. Lubin Fellows for going all-in on the fun. I know there are shirts and shoes that didn’t make it back in the return luggage.

The whole week isn’t just about fun and games, though. Each day, while the campers were off with the CCK staff, the parents gathered in the dining hall for a two-hour education session with the medical staff. Experts in the fields of neurology, psychology, disability rights, and rehabilitation answered questions and learned from the parents.

The beauty of a place like CCK is that there is something for everyone. At times, I sat back and watched as campers participated in arts and crafts, music therapy, and Stage Night (where songs were sung, jokes were told, and princesses were crowned). At other times, I jumped in and played basketball, paddled around the pond in a canoe, and baited fishing hooks (who knew catfish liked hot dogs?). During it all, a strange thing happened. I stopped noticing the wheelchairs, walking aides, and other signs of a disability and started to see the campers as just that…campers. I suppose that’s the point of Family Camp. It’s a place where these kids can go and not have to answer questions about why they are in a chair or have a surgery scar on their arm. It’s a place where they can go bowling, braid a horse’s mane, and most importantly, throw green oatmeal at their parents.

So when someone says, “CCK! How do you feel?”, we mean it when we say we feel so good.

Announcing the 2018 SRNA Quality of Life Family Camp!

SRNA is excited to announce that our partnership with the Center for Courageous Kids (CCK) in Scottsville, KY continues with our 2018 SRNA Family Camp. Be sure to mark your calendars for Sunday, July 22 through Thursday, July 26, 2018, for the next annual SRNA Family Camp!

HOW TO APPLY?

To begin the application process, please complete the form located at https://tma.ong/2BBlSZs. A SRNA staff member will contact you via email within 48 hours to share additional information about the application process.

WHO IS ELIGIBLE?

  • Families with children diagnosed with ADEM, NMOSD, TM, ON and AFM 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 initial 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 initial 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. CCK and SRNA are unable to offer transportation to and from camp. For a listing of ground transportation options between the airport and camp, please contact SRNA at [email protected]. Please do not make airline reservations until you receive an acceptance email or letter from CCK.

WHAT IS THE COST?

There is no cost for families to come to camp besides personal travel expenses. SRNA and CCK have a partnership under which we cover the cost of camp. SRNA will 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 2018. They will be offered on a first come, first served basis to eligible families until grant funds are no longer available. Grant funds are disbursed as reimbursements and only once each of the grant requirements are met.

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: [email protected] |1-855-380-3330 ext 5.

My First SRNA Quality of Life Family Camp

By Krissy Dilger, Program Associate at SRNA

As a kid, I never attended sleep-away camp, so I did not know what to expect when Sandy and I drove up to the Center for Courageous Kids on Saturday afternoon. The bright blue roofs of the camp’s housing and recreational buildings paired with the green fields of grass painted a beautiful landscape that helped build my anticipation for the next five days. As the newest staff member of SRNA, I was excited to meet the families and learn from their experiences with rare neuroimmune disorders. I had been told by other SRNA staff that I would gain a perspective from SRNA community that I could not have attained without attending camp. I was not disappointed.

Photos by Sandy Siegel

Over the next few hours, camp became a whirlwind of excitement as the families arrived and activities began. Returning campers quickly jumped into the swing of things and helped show new families the ropes. I was amazed by all the activities offered by the camp! Horseback riding, fishing, archery, swimming, bowling, arts and crafts, woodshop, cooking, and so much more. I could see why this camp was so unique and special: the kids were able to just be kids. They were not limited by any disabilities.  They didn’t have to worry about whether their wheelchair or walking aides would prevent them from participating. They were all on an equal playing ground. I felt the joyful and carefree atmosphere with every laugh and smile from the kids, and I was thankful to be a part of it.

One of the programs SRNA Quality of Life Family Camp offers is an educational session from leading medical experts in the field who also attend camp. While the kids were occupied by carnival games and other activities with the counsellors, their parents were able to learn from the medical experts and ask questions about all aspects of their children’s care. As I sat in on these sessions, I gained a deeper understanding of just how complicated and stressful it can be to care for a child with a rare neuroimmune disorder. There is a lack of understanding by many medical professionals who are not as informed as our experts, and it can cause unnecessary hardship and frustration to our community. One important conclusion I drew from listening to these sessions is that scientific research needs to be made more available to families so that they can provide this information to their health care team. As a result, I have become more resolved to review research and ensure summaries of this research are readily available for our members who rely on it.

Among the many benefits of camp, one of the most apparent is the connection made between families. Camp creates a unique atmosphere where families can find comfort in their shared experiences and ongoing realities. Relationships are formed in the dining hall, where families share meals sitting side-by side at long tables, and in the lodges during free time in the mornings and nights. They are formed while the families smear shaving cream and oatmeal on one another during Messy Games, and while they watch their kids sing and dance on Stage Night. I was a little worried coming into camp as an “outsider”, someone who has never had a rare neuroimmune disorder or known someone with one of these diseases before working for SRNA. However, I was easily swept into the community umbrella that camp created. Connections were made based on compassion and understanding, despite age or diagnosis or overall experience. I was happy to witness families exchange contact information and Facebook friend requests on the last day, knowing the connections they made were valuable and would extend beyond the bubble of those five days. By the end of camp, I could not tell the difference between returning campers and first-timers – everyone had become family.

To say that my first time at SRNA Quality of Life Family Camp was successful is an understatement. The entire experience far exceeded my expectations, and I am grateful for each moment I spent with the families and medical experts. From the wonderful counsellors to the jam-packed programming, the Center for Courageous Kids provided us with everything we could have wanted out of a camp experience. Going forward, I’m excited to continue SRNA’s work on education and advocacy programs, and I can’t wait to do it all again next year!

A Father’s Love for his Daughter: Finding Hope at SRNA Family Camp

By Nate Budington

On the fourth night of my daughter’s sudden hospitalization, when the diagnosis of transverse myelitis seemed pretty definitive, I was sitting in a spare wheelchair at the end of the corridor of Boston Children’s Hospital, staring out of a large plate glass window as a blizzard flew into the city. My wife and a nurse were attending to Ella and I was sent out of the room. In that seat, by the window, hearing the beeps and alarms of all that medical equipment in all those children’s rooms, I wondered how I–how we–were ever going to survive this emerging catastrophe. On Thursday, she and her brother ran out the door to catch the school bus, and by Sunday my wife and I were alternating between panic and despondency, hanging onto every small piece of hope we were offered. I acknowledged that some parents on our wing were facing something far more profound than paralysis, but at that moment, alone by myself, in tears, and at the mercy of an immune system gone haywire, I had never felt so completely isolated and untethered. One day all is good, the next day you’re falling from 36,000’.

We returned home to a welcoming and loving community of friends who made us meals, and had helped with my son while we were two hours away in Boston. They made it very clear they were there for us in any way they could be. The ramp had been built while we were at the hospital, the stair machine installed, the middle school was busily fixing desks and bathrooms, and by the time Ella wheeled into the house for the first time in two months, everything seemed sort of…normal – even if it was a new kind of normal. She transitioned into school amazingly well, and we all settled into life in a way that was oddly not too different than prior to her attack. The fear my wife and I had been battered by for weeks had morphed into a kind of bland acceptance.

But at unexpected moments, with or without Ella at my side, the isolation returned with a vengeance: when I saw teenage girls skipping down the street; when parents from her old swim team would post pictures from swim meets on Facebook; the day I gave her old bike to a friend with a young girl. That’s when I’d say to myself “No one knows what this is like.” I knew that somewhere out there someone did, but not in my life, not in my social orbit.

When we first heard about the SRNA Family Camp, I was intrigued but skeptical. We were secular New Englanders and this was the Bible Belt. Would Ella fit in? Would camp rub her condition in her face or help her find a community? Would we click with the parents? Would we be barraged by zealots offering sketchy “alternative” treatments? I don’t think we ever considered not going, but being a part of a “medical condition community” was new territory for us and we were unsure what camp was going to provide or whether it was worth the effort.

But a community was waiting for us. On the first night, sitting at a picnic table with two parents sharing stories and laughing in the face of this awful thing we are a part of, I felt like I could finally breathe. These people had been in the Transverse Myelitis world for years (for us it was just months) and they were OK. They could laugh. They had perspective. They were living their lives fully. The world wasn’t over. Over the course of four days, that kind of talk happened continually. And when we met with Dr. Greenberg and his colleagues in the afternoons, I realized the value of this community, medically and emotionally.

I’m still not at peace with what’s happened to my daughter, or any of these wonderful kids. I still have my moments of sadness and anger. But we’re much better off because of SRNA Family Camp. My daughter has a family of fellow TMers, and my wife and I know that all the wonderful people we met in Kentucky have our backs as we have theirs.

Enduring your child’s illness is a brutal journey, but the human connections we make along the way–the kinship and support we get from those who are along for the ride–somehow makes things work when you think nothing will. For me, that is the essence of SRNA Family Camp. It’s inspiring to watch these kids face TM with courage. And to believe that you can carry on as a parent with the same humor, balance and wisdom as before–that’s a gift.

SRNA Quality of Life Family Camp is a unique and life changing experience that provides children and families living with rare neuroimmune disorders (ADEMAFMNMOSD and TM) a chance to experience the joys of a completely accessible camp and engage with leading medical practitioners so they can be better advocates for their own health. At camp, these children can be themselves, free of fear and stigma and not be reminded of their daily challenges.