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Photo courtesy of Shawn Dickens.

Kids who live with chronic pain have same desire as anyone else their age: to feel understood, connected, and supported. Attendees at the second Pediatric Pain Warriors retreat, held over Memorial Day weekend in San Antonio, TX, experienced all this and more. The retreat included 90 kids with pain and their family members. (View a slideshow from the weekend.)

The weekend kicked off with a welcome dinner, which included a surprise visit from former Los Angeles Chargers linebacker Charmeachealle (Mike) Moore. On Saturday, children and their family members were treated to an education day with speakers covering topics from virtual reality for pain to medication safety. On the final day of the weekend, everyone headed to Morgan’s Wonderland, a handicapped-accessible theme park, for some well-deserved fun in the sun. Founded in 2010, the park admits anyone with a special need free of charge, no questions asked.

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For immediate release
Contact: Casey Cashman at 908-442-3257 or pediatricpainwarrior@uspainfoundation.org

San Antonio, TX (May 20, 2019)—Childhood is supposed to be carefree. But for the millions of kids navigating the challenges of living with painful conditions like fibromyalgia or juvenile arthritis, that’s not necessarily the case.

To help support children with chronic pain and their families, on May 24 to 27, the U.S. Pain Foundation will host its second Pediatric Pain Warriors Retreat at Morgan’s Wonderland in San Antonio, TX.

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On Jan. 24 and Feb. 11, Tyler Cashman, Director of Pediatric Fundraising, hosted two Points for Pain games, raising more than $5,000 for U.S. Pain’s Pediatric Pain Warriors program. The program provides support for children with chronic pain and their families through weekend retreats, education days, a magazine highlighting pediatric patient stories, a pen pal program, and more.

(The next retreat is May 24-26, click here to learn more!)

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A new video about the Pediatric Pain Warrior retreat in Disney World is now available. Held last November, the weekend brought together 142 kids with pain and their family members from across the country. 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 video was created by Yellow Dog Productions and highlights the kids’ experiences and why the weekend mattered to them.

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Navigating school systems on your child’s behalf can be overwhelming and confusing.

On Jan. 28 at 12 pm EST, the Pediatric Pain Warrior Program will host a webinar, “School accommodations: A parent’s guide,” to help parents and caregivers understand and advocate for their children at school.

The webinar will feature Mari Franklin, JD, an attorney specializing in children’s rights in the education system. Mari has experience with IEPs, 504s, and FAPE both professionally and personally–she has a daughter with Ehlers-Danlos syndrome.

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Most 16 year olds are focused on their cellphones and televisions. But not 16-year-old Tyler Cashman, of Tewksbury, N.J. Tyler will host two “Points for Pain” fundraiser basketball games at Old Turnpike Middle School on Jan. 24 at 5 pm and at Voorhees High School on Jan. 29 at 7 pm. [PLEASE NOTE: The Jan. 29 game has been reschedule to Feb. 11 due to inclement weather.] All proceeds benefit Pediatric Pain Warriors, which provides support for children with chronic pain and their families through weekend retreats, education days, a magazine highlighting pediatric patient stories, a pen pal program, and more.

Tyler raises funding by asking sports fans to pledge donations based on the number of points their team scores. In the last four years, he has raised more than $100,000. For his hard work, in 2017, Tyler received an award and $10,000 grant from the New York Yankees as part of HOPE Week.

While the focus of Points for Pain is fundraising, it’s also a great chance to raise awareness about pediatric pain. At the beginning of each game, Tyler explains the challenges these children faces and why support is so important.

Tyler established the program in honor of his mom, Casey, who lives with chronic pain. He witnessed her work with U.S. Pain Foundation, the leading nonprofit for children and adults with chronic pain, and wanted to help. Together, he and Casey collaborated with U.S. Pain Foundation to create the Pediatric Pain Warrior Program.

Unfortunately, Tyler is no stranger to chronic illness himself: He lives with a condition that is causing him to gradually lose his vision. But even his own personal challenges can’t get in the way of his dedication to helping others through Points for Pain.

For more information about Points for Pain, click here or email pointsforpain@uspainfoundation.org. Read More

Kids with pain have unique obstacles, and they deserve unique support. With this in mind, the 2018 theme for U.S. Pain’s annual KNOWvember campaign was pediatric pain. The month included daily facts on social media and four special webinar events.

Recordings of each event are now available via the links below. You can watch them at any time.

Cannabis and Children: Navigating Parents Through Stigma
Ellen Lenox Smith

U.S. Pain Foundation’s Co-Director for Medical Cannabis Advocacy Ellen Lenox Smith breaks down the therapeutic benefits of cannabis and how it has been used in treating children afflicted with chronic illness. =&0=&

A Grandparent’s Voice: Advocacy and Support for Chronic Pain Families
Nancy Rene

Nancy Rene, who worked in education for 36 years and is an active patient advocate who has previously served on a member of the Board of the Sickle Cell Disease Association of America,  offers tips and advice for engaging in your grandchild’s pain journey. =&1=&

NEADS Presents: Service Dogs for Tweens and Teens
Katy Harrison Ostroff, LICSW

Is your family considering a professionally trained service dog to provide assistance for a teen living with a physical disability? Katy Harrison Ostroff, LICSW, manager for client services at NEADS World Class Service Dogs, discusses the benefits of service dogs, how they are trained, and how to apply for these unique canines. The webinar includes a live service dog demonstration to see a service dog in action! Watch here.

Preventing Caregiver Burnout: Tips for Caring for the Caregiver
Marianne St. Clair, Life Coach, LMT

Marianne St. Clair shares her journey about burning out as the sole caregiver for her chronically ill daughter. She also discusses recognizing burnout signs, the difference between burnout and stress, coping strategies and resources– and the steps she took toward recovering and building the next phase of her life and career from burnout to bliss. Watch here.

To learn more about the campaign, visit the KNOWvember webpage. For questions, email Shaina@uspainfoundation.org.

 

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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.”
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