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NMOtion Blog

Discussing NMO Research and Advocacy

Alexander City, ALIn June 2016, the University of Alabama at Birmingham’s (UAB) Center for Pediatric Onset Demyelinating Disease (CPODD) hosted its annual retreat for families who have children living with neuromyelitis optica (NMO) and multiple sclerosis (MS). Co-Founder of The Collin McDaniel Hope Foundation, Lisa McDaniel, blogs about the three-day family summer camp.

Alabama’s summertime weather is renowned for its hot, humid days and nights. Temperatures can reach close to 100 degrees with over 90 percent humidity. Escaping the sticky heat is challenging for everyone. For children living with NMO and MS, it’s especially difficult and can be dangerous. Countless reports exist of NMO and MS patients experiencing attacks in this type of extreme heat. As a general rule, many live by the adage that heat not only can, but will trigger a neurological attack.

For NMO children, heat can act as a physical barrier which prevents them from doing things like playing outside or going on vacation. With this in mind, we set out to break this barrier and provide them with an opportunity to do both. We’re determined to give them the chance to join millions of other boys and girls in a rite of passage that is woven in the fabric of the collective childhood experience – a good ol’ fashion summer camp.

“The building blocks of self-esteem are belonging, learning, and contributing,” says Michael Popkin, Ph.D., family therapist and founder of Active Parenting. “Camps offer unique opportunities for children to succeed in these three vital areas and even beyond home and school.”

Yet, it’s not easy to find a location that offers outdoor activities, while being able to protect the children from the harsh environment. After a lot of searching, we found the Children’s Harbor campus, which is nestled among the tree-lined shores of Alabama’s Lake Martin. Children’s Harbor is a nonprofit that donates their facility for chronically ill children. The campus “offers several ways for patients and their families to come together and reconnect, often outdoors, in a safe environment for children with various diagnoses.” With air conditioned rooms, and a lake to cool off in, it’s a great spot to host our annual summer camp.

Who Attended

Funded by UAB, The Collin McDaniel Hope Foundation, the National Multiple Sclerosis Society, other organizations and private donors, this year’s CPODD Family Retreat welcomed 16 families, with eight children living with NMO and eight children living with MS.

It’s the first time most of these families have an opportunity to interact with other families who share the life-changing diagnosis of NMO.  It’s also the first time MS families learn about NMO. The retreat allows the children, their parents and siblings, to learn more about NMO, while building supportive lifelong friendships.

CPODD Family Retreat Goals

  1.  Educate families about individual demyelinating diseases
  2. Teach people how to live with their chronic conditions
  3. Connect families with similar experiences

“We are not alone and we now realize that. It’s incredibly overwhelming, but also comforting to realize my child is not the only child going through this.” – Father of 9-year-old son newly diagnosed with NMO.

According to author/educator, Peter Scales, Ph.D., who is a Senior Fellow at The Search Institute, “The biggest plus of camp is that camps help young people discover and explore their talents, interests, and values.”


2016 CPODD Family Retreat
“Superhero” Theme

“The ‘Superhero’ theme,” explains CPODD director, Jayne Ness, M.D., “was picked in order to show the kids and families the strength that’s hidden just below the surface of their disease.”

Dr. Ness is a pediatric neurologist at UAB. Working at the UAB’s MS center, she has treated hundreds of children with MS, and many with NMO.

“We like ‘Superhero’ because all of our families are on a journey,” says Dr. Ness. “They must peel away the layers of feelings surrounding chronic disease to find the superhero within themselves. Families living with NMO and MS have special challenges and face overwhelming obstacles, which are the villains against their superhero. Each family is a team and can finish strongly if they work together to overcome the villains in their lives.”

The program includes

  • Family-building exercises
  • Education
  • Q&A sessions
  • Recreation

Activities such as boating, swimming, arts and crafts and dancing help families bond and relax. It’s a welcome reprieve from the countless exhausting trips to hospitals.

Parents are informed how to advocate for their children by working with schools and hospitals, and how to cope with their children’s daily lives.

Workshops have loaded curriculum, offering education for topics including research updates, disease information, symptom management and a presentation about NMO by The Guthy-Jackson Charitable Foundation.

Best Things About Camp

We ask the children what they liked best about camp. They focus on the activities. The drum circle, boating and swimming are at the top of the list. They also really like the martial arts and self-defense classes.

When asked the same question, many parents reply with tears welling in their eyes. For them, the best part is watching their children interact and play away from hospitals and medical offices.

“One of my favorite things is watching the kids and how much they work to play, interact and be together.” – Gina Adams, mother of a teenage girl diagnosed with NMO.

Many families feel that being at camp is the most relaxed they have been since their children became sick. They tell me how much they appreciate being able to live with no one questioning them about their children’s condition.

“All the information and advice on schools was amazing,” says a camp parent.  “I had never heard of The Guthy-Jackson Charitable Foundation until camp. I can hardly wait for Patient Day!”

Conclusion

The camp is over and I’m packing my things to go home. Everyone had a great time, as they were able to take a break from their stressful lives to bond with their families. As I’m packing, I walk up to Addison, a 10-year-old girl diagnosed with NMO. Her family and I actually live close to each other, so I drove Addison and her sister to camp this year.

“Did you have fun?” I ask her.  She looks up at me and says, “I am the strongest Superhero ever!”

As we get in my car to leave, Addison asks me if there will be a CPODD summer camp next year. I tell her “yes,” and I start the ignition. The car slowly pulls away. The three of us are silent. We can hear the tires crunching rocks on the road. We’ll remember this trip for the rest of our lives.

Lisa McDaniel is an NMO Advocate Consultant for The Guthy-Jackson Charitable Foundation.

Are you raising awareness for NMO? Get resources here. Share what you’re doing, or find out what others are doing.

Photos

View entire CPODD Family Retreat 2016 Photo Gallery on Flickr.

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