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City & state: Saco, ME

Age: 55

Pain warrior role: U.S. Pain advocate since 2014

What type of health conditions you live with: Chronic back pain, narcolepsy, migraines

Favorite tip for others with chronic pain: Each person living with a chronic condition has a hidden talent; find it, and you can build your self-worth back and become part of your community again. Our new families are the people that support us on good days and bad.

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Our second Pediatric Pain Warrior retreat is quickly approaching, and registration is open. The retreat will be held at the ultra-accessible fun park, Morgan’s Wonderland. Morgan’s Wonderland is located in San Antonio, TX, and is specially designed for people of all abilities. The retreat will be held May 24-26.

“Our goal is to bring young people living with pain and their families together, to educate them, and help them connect to other pain warriors and their families,” says Director of Pediatric Pain Warrior Program, Casey Cashman. Cashman continues saying, “Morgan’s Wonderland provides the perfect opportunity to our pain warriors to enjoy their weekend without the barriers they normally face.”

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In mid-March, prospective leaders of chronic pain support groups all over America gathered in San Francisco for a weekend of specialized training. Skilled trainers from U.S. Pain Foundation were there to teach the strategies that will allow attendees to effectively establish and run support groups across the country.

“This was our fifth chronic pain support group leader training,” said Gwenn Herman, LCSW, DCSW, Clinical Director of Pain Connection, a program of U.S. Pain Foundation. “I am always amazed watching the leaders develop confidence, knowledge, and compassion. This San Francisco training group was wonderful and the family members that attended added depth to our discussions.”

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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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Last week, the Consumer Pain Advocacy Task Force (CPATF)–a coalition of pain patient-related nonprofits, including U.S. Pain Foundation–submitted a letter to Department of Health and Human Services (HHS) Secretary Alex Azar regarding the draft report on pain released by the HHS Pain Management Best Practices Inter-Agency Task Force.

The CPATF also plans to submit a longer letter to the federal docket with more specific feedback by April 1.

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U.S. Pain Foundation has partnered on a survey with Tamadé, a Virtual Reality (VR) company that has developed a program for chronic pain, to learn more about how pain impacts your life and how VR might help.

The survey takes approximately 20 minutes to complete. Everyone who takes it will be entered to win one of 30 $10 gift cards to Amazon. (Remember to use Amazon Smile, which automatically donates 0.5% to a charity of your choice, if you win!)

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Did you know that pain is the leading cause of long-term disability in America? During a webinar on March 19, we’ll be talking about the challenges of working with chronic pain and considerations for applying for Social Security Disability Insurance (SSDI). Our featured speaker is Rebecca Ray of Allsup, one of the leading national providers of SSDI representation.

Through the webinar, you’ll learn about:

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In late December, a high-ranking federal task force released a draft report with recommendations for improving the management of chronic and acute pain nationwide. The landmark report will be finalized and submitted to Congress at the end of May. The pain community is being asked to give feedback on the report by April 1–less than a month away.

“It is vital that people with pain weigh in,” says Cindy Steinberg, National Director of Policy and Advocacy, who was the only patient and patient advocacy representative on the task force. “This report could change people with pain’s lives for the better. It promotes a multidisciplinary, multimodal approach to pain care and addresses barriers to accessing effective treatment. It says that treatment decisions should be made on a case-by-case basis that considers the unique situation of each patient. It addresses the stigma around chronic pain and lack of public, provider and patient education on pain management. It provides a comprehensive view of the gaps in pain care in the United States today and detailed recommendations on how to ameliorate them.”

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From Feb. 10 through 13, representatives from U.S. Pain Foundation proudly participated in Headache on the Hill (HOH) in Washington, DC, for the second year in a row. Organized by the Alliance for Headache Advocacy, HOH is an event that bring together patients, caregivers, and providers to advocate for people with headache, migraine, and cluster diseases at the federal level.

This year, a total 160 advocates attended, including 23 individuals–a combination of staff, volunteers, INvisible Project participants and individuals from Chronic Migraine Awareness–sponsored by U.S. Pain Foundation.

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Photo courtesy of HELP committee

On Feb. 12, for the first time in years, Congress held a hearing on chronic pain. We were proud to have Cindy Steinberg, National Director of Policy and Advocacy, as one of the four selected witnesses who gave testimony. As a reminder, you can watch a recording of the hearing here.

Hearing makes headlines

The hearing–and Steinberg’s remarks in particular–received a multitude of coverage at the national and local level. Here are some of those articles.

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