We want to share an update regarding a situation discovered earlier in 2018. As a result of an internal audit, we were dismayed to discover financial irregularities involving the former CEO of U.S. Pain Foundation. The Board of Directors immediately hired an independent attorney and a forensic accountant to investigate. The findings were clear that this individual had misused funds from the U.S. Pain Foundation. The Board concluded that the former CEO repeatedly misled and concealed information from the Board of Directors and staff. The Board demanded and received the former CEO’s immediate resignation.
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
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.
Location: North Royalton, OH
Pain warrior role: U.S. Pain ambassador since 2013
Pain conditions: Full body reflex sympathetic dystrophy, migraine, trigeminal neuralgia, fibromyalgia, dysautonomia, chronic fatigue syndrome, thoracic outlet syndrome, dystonia, gastroparesis, diabetes, narcolepsy, myoclonic jerks, deep vein thombosis, and neurovascular dystrophy.
Favorite tips for living with chronic pain: “I start off my support group with some advice to our newbies. I tell them and remind ourselves that we need to grieve for the old you. Most of us, especially those with debilitating injury or illness, those of us whose lives changed dramatically find it very difficult to accept these changes. To ask for help. To NEED help daily and to those who are extremely independent. LET IT GO! The quicker you do, you will have enough energy to find the NEW and IMPROVED YOU!”
Earlier last month, U.S. Pain Foundation published its 12th edition of the INvisible Project, the pediatric second edition. The issue features the stories and photos of 10 children living with painful conditions ranging from spina bifida to complex regional pain syndrome. It is the fourth and final edition to be published this year. The magazine was released in conjunction with the first-ever pediatric pain retreat, held Nov. 9 through 11.
Election Day was an exciting night for citizens hoping for legal access to medical cannabis. Both Missouri and Utah joined the list of states with medical cannabis programs, bringing the total of states with medical programs to 33, plus Washington, D.C.
Nine states now have recreational access: Michigan was among the states to approve recreational cannabis as part of the midterm elections, and while a recreational proposal in North Dakota did not pass, medical cannabis remains legal there. Finally, Wisconsin voters in 16 counties approved several advisory measures relating to cannabis, including measures to legalize medical cannabis, but the legislature must decide whether to act.
On Nov. 3, CrossFit Los Altos and Focused Individual Trainers hosted its annual Fight Gone Bad fundraiser workout to support the efforts of U.S. Pain Foundation. A total of 45 athletes participated, raising more than $22,000 to support two recently held patient education days in Chicago and Boston and an upcoming support group leader weekend training.
The fundraiser is a organized by Rick Dyer, director of CrossFit Los Altos, in honor of his wife Nicole Hemmenway, interim CEO of U.S. Pain Foundation. Hemmenway lives with complex regional sympathetic disorder.
The Interagency Pain Research Coordinating Committee (IPRCC), the nation’s highest-level pain policy committee, convened on the campus of the National Institutes of Health (NIH) on Nov. 16 for its second meeting of 2018. U.S. Pain Foundation has two appointees on this prestigious committee: Cindy Steinberg, national director of policy and advocacy, and Gwenn Herman, clinical director of Pain Connection.
According to new national data, an estimated 50 million or 20.4 percent of U.S. adults have chronic pain. Meanwhile, 19.6 million or 8 percent have high-impact chronic pain. The study was reported in the Sep. 14 issue of the Morbidity and Mortality Weekly Report, a Centers for Disease Control and Prevention publication.
“This recent epidemiological study is incredibly important, because it provides the most precise data we have to date on the prevalence of chronic pain and high-impact chronic pain in the U.S. adult population,” says Cindy Steinberg, U.S. Pain Foundation’s national director of policy and advocacy.
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.