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Through Pain Connection, U.S. Pain Foundation offers a network of support groups across the country. These support groups are led by people with pain who have received special training via Pain Connection’s Clinical Director, Gwenn Herman, LCSW, DCSW, a licensed social worker and person with pain.

We are currently looking to expand our support group offerings to even more states through our next training on March 16 & 17 in San Francisco, CA, at the Hilton Garden Inn San Francisco Airport/Burlingame.

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Pain patients need and deserve a seat at the table (even if it means bringing in a cot!). On Feb. 12, they finally got one.

“We are incredibly grateful to the Senate Committee on Health, Education, Labor, and Pensions (HELP) for including Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain, during its hearing on ‘Managing Pain During the Opioid Crisis,'” says Interim CEO Nicole Hemmenway. “We are even more grateful to Cindy for bravely sharing her story and perspective.”

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We are delighted to share the dates and location of the next Pediatric Pain Warrior weekend retreat: May 24-26 at Morgan’s Wonderland in San Antonio, TX.

Morgan’s Wonderland is an ultra-accessible family fun park with rides and activities for kids of all ages and abilities. Like with the inaugural 2018 retreat, the weekend will bring together children with pain and their families for a weekend of education, support, and fun.

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Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain Foundation, has been selected as one of four expert witnesses to speak at a hearing of the U.S. Senate Committee on Health, Education, Labor, and Pensions. The hearing, “Managing Pain During the Opioid Crisis,” will take place in Washington, D.C., next Tuesday, February 12, at 10 am EST.

Steinberg will be allotted five minutes to speak and will answer questions from committee members. One of her key messages: While we must ensure that Congress’ large investments to ameliorate harms from opioid use disorder are accomplishing that important goal, we also must correct unintentional harms suffered by Americans living with pain and ensure that policy reform going forward considers pain patients’ needs as well.

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U.S. Pain Foundation is pleased to announce its 2018 Joselynn Badmann Ambassador of the Year is Dawn Stancliff. Stancliff has been an ambassador and advocate for the U.S. Pain Foundation since 2014 and has lived with chronic pain her entire adult life. In 2018 alone, Stancliff connected with thousands of patients through events she hosted and attended as a U.S. Pain ambassador and advocate.

“This year has been the most rewarding year yet for me with the US Pain Foundation,” says Stancliff. “I feel that everything I speak about to pain patients align with U.S. Pain, as my core values align with those of U.S. Pain. The mission of the U.S. Pain Foundation is truly my life’s mission.”

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Become a support group leader

Pain Connection, a program of U.S. Pain Foundation, will host a two-day training program for support group leaders in mid-March in San Francisco. The dates are most likely to be March 15-17, but will be confirmed in the coming week. All are welcome to apply to attend.

The trainings are designed to teach peer leaders and/or health professionals to work with individuals with chronic pain in a group setting. Attendees leave feeling empowered to begin their own local support groups, with ongoing guidance and help from Pain Connection. Presently, U.S. Pain and Pain Connection offer support groups in 14 states, in addition to three monthly conference call support groups.

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Full name: Nancy Harris Bonk

City & state: Buffalo, NY

Age: 56

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

Type of health conditions: Migraine disease, intracranial hypertension, fibromyalgia to name a few!

Favorite tip for others with chronic pain:  Living with migraine, a neurological brain disease, can be overwhelming and frustrating but, accepting our diagnosis is important and doing so enables us to become educated and empowered patients!

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Rare Disease Day is Feb. 28

The National Organization of Rare Disorders’ (NORD) yearly Rare Disease Day will be observed on Feb. 28, 2019. Rare Disease Day is an annual celebration the 25-30 million Americans living with one of the over 7,000 rare or orphan diseases. One in ten Americans suffers from a rare disease, a disease affecting less than 200,000 people.

This year’s campaign, “Show Your Stripes,” calls for the rare disease community to proudly dawn stripes on Rare Disease Day. Patients with rare diseases are sometimes referred to as “zebras.” The term comes from the aphorism coined in the late 1940s by a clinician who instructed his medical interns: “When you hear hoofbeats, think of horses not zebras,” meaning that they should consider the most likely or common condition when diagnosing patients. With rare disease patients, however, clinicians must think of more rare conditions, or zebras.

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Social Security Disability Insurance (SSDI) can be a lifeline for individuals who are disabled by chronic pain. If approved, it can provide monthly insurance benefits to those whose disabilities are so severe that they cannot work a substantial amount. However, the application and approval process can be rigorous, and because assessing pain can be extremely challenging — given that it is invisible, subjective, and stigmatized — this may mean that some individuals with pain are incorrectly denied benefits.

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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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