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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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On Jan. 31, U.S. Pain Foundation’s Advocacy Network will host a free training session for existing advocates and interested volunteers to learn what it means to be a patient advocate.

Attendees will learn about issues impacting Americans with chronic pain and what patient advocacy really means.

Those who register will also learn about:

  • How decisions are made at the state and federal level
  • Building relationships with lawmakers
  • Various ways to advocate
  • Why sharing patient stories matter

To register, click here.

Learn more by watching a video here.

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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

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A recording is now available of U.S. Pain Foundation’s Nov. 26 panel discussion, “Chronic pain and the risk of suicide: A staggering crisis and what to do about it.”

The event was prompted by a study published this September in the Annals of Internal Medicine, which found that more than 10 percent of suicide cases in the United States involve chronic pain. Panelists discussed reasons behind this statistic, offer tips for coping with the mental health challenges pain creates, and gave suggestions for how clinicians and caregivers can help.

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According to a study published this September in the Annals of Internal Medicine, more than 10 percent of suicide cases in the United States involve chronic pain. We have long known that people with pain are more likely to struggle with depression, anxiety, and suicidal ideation–on top of physical suffering. But this number is staggering, and indicates the need for more awareness around the degree of despair pain can cause.

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Volunteers who have signed up to join the Advocacy Network joined an invitation-only training webinar to learn about an issue impacting families and individuals across the country: surprise bills.

The presentation was the first of a series of advocacy training webinars scheduled for the upcoming year, according to Director of State Advocacy and Alliance Development, Shaina Smith. “We’re really trying to develop and offer resources that will improve the lives of people with chronic illness through education,” Smith explains. “The more we learn as a community, the greater chance we will have at successfully moving patient-friendly policies forward.”

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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.

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Medical research is essential to advancing pain care. On Sept. 25, U.S. Pain members were treated to a webinar covering the ins and outs of medical research studies. The event, “Patient empowerment in clinical trials,” was presented by Lindsay Wahlstrom-Edwards, Director of Partnerships at Antidote, a digital health company that helps connect patients with clinical trial opportunities.

During her talk, Wahlstrom-Edwards explained the different types of clinical research and key terms, like “protocol” and “principal investigator.” She also talked about the importance of engagement. According to Wahlstrom-Edwards, approximately 80 percent of medical research is delayed or cancelled due to difficult enrolling participants.

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The U.S. Pain Foundation is excited to present the next event in its bimonthly webinar series, “From ow to om: Using mindfulness to reduce pain and stress,” featuring Gwenn Herman, LCSW, DCSW. Herman is the clinical director for U.S. Pain’s Pain Connection program, a network of support groups and other resources for people with pain.

During July’s webinar, to be held on the 17 from 1 to 2 pm EST, Herman will focus on using meditation and mindfulness to lower pain and stress levels. She will discuss the science behind mindfulness, different techniques, and lead attendees in a guided meditation. There is a great deal of scientific data to support the positive effects of mindfulness meditation for people suffering from chronic pain, and this free webinar is a rare opportunity to learn from someone who intimately understands these health issues.

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Grover during the webinar.

On May 15, U.S. Pain’s bimonthly webinar featured Jenni Grover, also known as ChronicBabe, who has dealt with fibromyalgia and other health issues for over 20 years. Through ChronicBabe.com, she has helped thousands of women cope with their own chronic pain. (Grover is also an editorial consultant with U.S. Pain’s INvisible project and a longtime patient advocate.)

Her recent book, “Chronic Babe 101: How to Craft an Incredible Life Beyond Illness,” is a collection of resources about “how to kick butt despite chronic pain.” In the webinar she spoke specifically about a chapter on acceptance, part of the “grieving process” that is hard to get past when dealing with chronic health issues. Acceptance isn’t a loss or defeat, she explained, and viewing it as a war to be won means seeing your body as the enemy.

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