Last weekend, more than 125 kids with chronic pain and their families traveled from across the country for the first-ever Pediatric Pain Warrior retreat in Disney World. The event was the official kick-off of U.S. Pain’s new Pediatric Pain Warrior program, which is dedicated to the unique needs of children with chronic illnesses and their loved ones.
The weekend included plenty of opportunities for fun, like dinner with Mickey Mouse and a scavenger hunt, but the focus was education and empowerment. Saturday featured a full day of presentations ranging from the importance of talking about pain and sharing your story to tips for living with common pain conditions, like Ehlers-Danlos syndrome and complex regional pain syndrome. The retreat also celebrated the release of the INvisible Project: Pediatric second edition, which will be available online in the coming weeks.
Most important, however, the event was a time for kids with pain and their family members to connect with others like them, share their experiences, and realize they’re not alone.
Here are some of the comments from attendees:
- “We laughed, shed tears, bonded together with new and old friends in ways only people living with pain could understand, and celebrated the warriors and their wins. We are grateful as a family to have had the opportunity to be included. We cherished each moment of the event and look forward to the ripple effects in the future. Thank you to everyone who made this a memorable and special weekend.”
- “Casey and Tyler. I can’t begin to tell you what this meant to us. The invaluable information at the conference itself, the beautiful new friendships we’ve forged, the deepening of current connections, the overall comradery, and the downright FUN will never be forgotten.”
- “Words cannot express the amount of gratitude we have for all that made this weekend possible. We have so many unforgettable moments with so many unique folks. Again, so many emotions I wish I could portray into words. Big, huge heartfelt stuff all weekend. From the first night at Mickey’s Backyard Barbecue to the last night, l was either in tears or in goosebumps.”
A slideshow of photos from the weekend is available here. The retreat was organized by Casey Cashman, director of the Pediatric Pain Warrior program, with support from Associate Director Rachel Horcher and Director of Pediatric Fundraising Ty Cashman.
“Our goal is to make kids feel empowered and understood, and most importantly to make sure every child and family living with chronic pain knows they are never alone and that there is hope!” says Cashman. “This event would not have been possible without the support of so many wonderful donors. We are incredibly grateful to them.”
Major sponsors include Teva, CIT Group, The Greenbriar Companies, The New York Yankees, and Johnson & Johnson, as well as individual donors to U.S. Pain’s Points for Pain initiative. Numerous companies also donated items for giveaways and raffles, including Oska Wellness, Pain Care Labs, Quell by Neurometrix, AloeVeritas, Nuun, Udi’s Gluten Free, Miss Hannah’s Gourmet Popcorn, Glutino, AloeVeritas, Bluebird Botanicals, Enjoy Life, Oriental Trading, and SkinnyPop.