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.
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.
U.S. Pain’s Director of State Advocacy and Alliance Development Shaina Smith was among the speakers at the Biotechnology Innovation Organization’s (BIO) Patient and Health Advocacy Summit held Oct. 25 and 26 in Washington, D.C. The annual event brings together patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders to discuss timely policy issues and share best practices. This year, attendees were treated to a surprise appearance from U.S. Secretary of Health and Human Services Alex Azar.
Now through Nov. 2, AmazonSmile is donating 5% of all purchases back to a charity of your choice, including U.S. Pain Foundation! AmazonSmile offers all the same products, at the same prices, as Amazon.
“If you’ve ever wanted to donate to U.S. Pain and give back to our programs for people with pain–from support groups to the INvisible Project–but couldn’t afford it, this is a great, free chance to help,” says Nicole Hemmenway, Interim CEO.
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.”
On Oct. 20, more than 60 pain warriors from the greater Chicago area attended U.S. Pain’s eighth Take Control of Your Pain event. Take Control of Your Pain is a series of free educational days for people with pain and their caregivers. The events, held in locations across the country, bring together pain warriors with experts in a variety of fields related to pain management. The events also are a chance for people with pain to connect with one another and meet with U.S. Pain representatives.
City & state: Allentown, PA
Age: 42 years old
Pain warrior role: U.S. Pain advocate since 2017
What type of health conditions you live with: Fibromyalgia, Tourette’s syndrome, small fiber neuropathy, migraine disease, trigeminal neuralgia, occipital neuralgia, chronic back pain, and Raynaud’s phenomenon.
What is your favorite tip for others with chronic pain: “I want everyone to know that neither you or your diagnoses are invisible. There are people out there who understand what you are going through. If you are still undiagnosed, I urge you to not give up. There is a ton of information and resources out there that can help you and the doctors you are working with to assist you get answers.”
Policymakers across both aisles have had mixed viewpoints when it comes to cultivating cannabis, not in the literal sense, but as it relates to bills that would permit individuals to access medical cannabis. Several states, however, are expanding or considering expanding their medical cannabis programs, including Illinois, New York, and New Jersey. In addition, some federal institutions have taken steps to improve access: the Food and Drug Administration (FDA), the Drug Enforcement Administration (DEA), and Congress.
It’s that time of year! Nominations are now open and being accepted now through Nov. 30 for the 2018 Joselynn Badman Ambassador of the Year Award. Do you know someone who has gone above and beyond in spreading pain awareness this year? Help U.S. Pain recognize pain warriors who actively spread awareness while inspiring others to educate and empower their pain community.
Nominees must be a pain ambassador or advocate with U.S. Pain. In addition, nominations must be made by someone other than the nominee; self-nominations will not be accepted.