MoreMore

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!)

Read More

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.

Read More

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.

Read More

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.

 

  Read More

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.”
  • Read More

    Each November, U.S. Pain offers a month-long educational campaign to provide helpful information and resources to people living with pain and their caregivers. In honor of the young individuals who have had to find their new “normal” at an early age, U.S. Pain Foundation is dedicating this year’s KNOWvember campaign to pediatric pain warriors.

    Children with pain and their families face a unique set of challenges. To help them navigate these challenges, U.S. Pain will provide daily social media facts throughout the month and the chance to interact leading experts in the pediatric pain arena through several webinars.

    To sign up for a webinar, click the registration links below.

    Cannabis and Children: Navigating Parents Through Stigma
    Nov. 15 at 7 pm
    Ellen Lenox Smith

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

    A Grandparent’s Voice: Advocacy and Support for Chronic Pain Families
    Nov. 19 at 12 pm EST
    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, will offer tips and advice for engaging in your grandchild’s pain journey. Register here.

    NEADS Presents: Service Dogs for Tweens and Teens
    Nov. 29 at 6 pm EST
    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, will discuss the benefits of service dogs, how they are trained, and how to apply for these unique canines. The webinar will include a live service dog demonstration to see a service dog in action! Register here.

    Preventing Caregiver Burnout: Tips for Caring for the Caregiver

    Read More

    Each year, U.S. Pain engages in a month-long educational campaign aimed at providing helpful information and resources to people living with pain and their caregivers. To honor the young pain warriors who have had to find their new “normal” at an early age, U.S. Pain Foundation is dedicating this year’s KNOWvember campaign to pediatric pain warriors.

    Through virtual offerings such as webinars, Twitter chats, and Facebook live events, along with daily facts, the pain community will be given the chance to engage with leading experts, nonprofit organizations, children with chronic illness, and others passionate advocates.

    “We understand the real-life struggles families go through when a young person is diagnosed with an incurable pain condition,” says Casey Cashman, Director of U.S. Pain’s Pediatric Warrior Program. “This year’s KNOWvember campaign will offer parents, caregivers and children the chance to learn more about either their condition, ways to manage challenges along their pain journey, helpful resources that exist across the country, and empowering tools these unique families can use to encourage successful pain management outcomes.”

    Curator of the campaign Shaina Smith, Director of State Advocacy and Alliance Development, says this year’s presenters will be able to relate to both the parents and children. “We wanted to allow pediatric pain warriors the opportunity to engage in this year’s virtual speaking presentation too,” Smith explains. “This campaign is really about honoring their strength, their courage, and showing them how to further harness their incredible will-power to craft a meaningful pain journey.”a

    This year’s KNOWvember presentations will include programs such as:

    Keep an eye out for more details to come on social media and in your inbox.

     

      Read More

    Psychologist Jenna Krook, MS, offers advice on how to become your child’s best advocate.

    Dear fellow parents,

    Our journey started seven years ago when our son was diagnosed at 10 years old with reflex sympathetic dystrophy (RSD). This mysterious and debilitating condition was overwhelming—it became the center of our lives.

    Being an advocate for a sick child is a difficult role. When you face a condition as misunderstood and overwhelming as RSD, finding the time and resources to discover and advocate for treatment and intervention is a challenge. Learning what will work for your child takes time, and there is no quick answer.

    Sources of strength

    We have been blessed to share our journey with a family that provides us with support and guidance. Parents to an extraordinary young woman who faced RSD, survived, and ultimately thrived, they shared their experience and knowledge—which makes an enormous difference. What follows here is a summary of our collective experience that we hope will help you.

    The diagnosis process

    The process of getting an RSD diagnosis, or any diagnosis, requires advocacy. I know it’s disheartening to see a number of doctors who often misunderstand the condition. It takes time—which is a quandary, because a fast diagnosis is critical to recovery.

    It is helpful to bring a document to all appointments that lists your child’s symptoms, doctors/specialists, descriptions of injuries, overview of previous treatments, and your questions and concerns. You may need to go to several appointments and see several specialists before you feel like you have found your “team”—the group of specialists who will help your child heal.

    Become an investigator

    It is essential to investigate and become knowledgeable about your child’s condition. You may find it helpful to access resources like books and articles related to pain conditions; interview specialists/doctors knowledgeable in the area of chronic pain conditions; and join organizations or foundations related to pain disorders.

    Reaching out to support groups and getting connected with families that are facing the same challenge is also valuable. You will not only gain the support of others who understand your situation, but you will also gain knowledge regarding treatment options.

    Because no single treatment works for everyone, you will need to continue investigating and trying new treatments. Often, the only way to find out about these options is to connect with those who have taken this journey before you.

    The importance of education

    One area of advocacy we found critical was educating the child in pain, as well as their siblings.

    Our goal is to help our children with chronic pain learn to advocate for themselves. They can’t do this without understanding the science behind the condition. Consider providing the information in a written form along with visuals (like photos and diagrams) so your child can always return to the information when questions arise.

    When we educate children, we empower them. Knowledge gives them the strength to advocate and educate others. Even more important, when children understand what is happening in their body, they can begin to understand how each treatment creates change in the body. This knowledge assists in the healing process.

    Shifting the focus away from mental health

    Most of us have been to doctors who look for mental health-related explanations for pain. You may find yourself educating doctors and advocating for treatments that address the pain condition rather than focus on mental health.

    There is a need to provide emotional support for a child facing a chronic illness, but beware the doctor who believes that a mental health condition is the cause of the pain. Be vigilant in directing care in a manner that provides emotional support/therapeutic intervention for a child who is suffering from a pain condition, versus directing care at a mental health condition as a reason for the pain.

    Seek specialists

    Keeping an open mind about treatment options is essential. Investigating alternative/naturopathic methods of treatment can be useful in developing your “team” of specialists. Be willing to advocate for these less-conventional, often less-understood treatment modalities, because they may help provide pain relief for your child.

    Advocate at school

    You will also have to advocate in a complicated school system. Sharing your knowledge with school staff is a fundamental step toward securing services/accommodations.

    Request a meeting with school staff and support personnel. In this meeting, provide a document that educates them on the unique medical needs of your child. Offer a signed release of information so school staff can access the expertise of your specialists.

    The school staff may consider developing a 504 plan, a legal document that can ensure accommodations like modified homework, extended time on assignments/tests, schedule changes, timing of classes, access to tutoring, study halls, counseling, restricted physical education, and more.

    Make time for fun

    Be an advocate for laughter and play. This staggering, potentially disabling condition has the ability to strip our children and our families of joy. As we search our souls to find gratitude and hope for a better tomorrow, we must keep a sense of humor, laughter, and play in the lives of our children.

    On days that feel hopeless, we must find ways to be together and infuse play into our day. Including your child’s friends in these activities—finding ways to keep our children included in their circle of friends—maintains joy. Finding the strength to create joy can be one of our greatest works of advocacy.

    About Jenna Krook, MS

    Jenna Krook holds a Master of Science in Counseling and a School Psychology Credential. Jenna has 23 years of experience as a psychologist, both as a school psychologist and in private practice. Her efforts are focused on helping children learn social skills, increase self-esteem, manage anger, and achieve healthy emotional development—even in the face of challenges. She works hard every day to never take for granted her health and well-being as well as that of her children. Jenna lives in Walnut Creek, California with her husband, 17-year-old-son, and 13-year-old daughter. Read More