U.S. Pain’s educational resource website, Learn About Your Pain, has begun an update to provide more comprehensive information and support. As part of that update, the website will include additional patient resources, including videos from experts in the field and from patients living with the condition. The website’s re-boot has been made possible with a grant from Germany-based pharmaceutical company, Grunenthal.
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.
U.S. Pain Foundation seeks to educate its members about all possible forms of treatment. Buprenorphine is one pain medication that has recently made headlines as a safer alternative to traditional opioid medications. Because it is a partial opioid agonist, it alleviates pain with less risk of euphoria and physical dependence as well as a smaller chance of respiratory depression.
U.S. Pain recently collaborated with The Herald Group to conduct an educational survey on members’ experiences with buprenorphine. More than 800 individuals responded. Here are some of the key findings from that survey:
Just in time for Pain Awareness Month, U.S. Pain Foundation is announcing the launch of a new blog.Called Remedy, the blog aims to provide people with the support they need to thrive despite chronic pain.
“While we offer an overview of U.S. Pain’s efforts in our newsletter and lots of educational information on our various websites, we saw a need for more timely content directly related to life with chronic pain,” says Emily Lemiska, Director of Communications. “We want to offer our community more tangible resources to improve their quality of life and more education to help inform their treatment decisions.”
In honor of Pain Awareness Month, U.S. Pain is ramping up its online event offerings, with one event each week throughout the month of September. All of the events are free and open to the public. Some events require advance registration.=&0=&. On Sept. 5 at 2 pm EST, U.S. Pain’s NIcole Hemmenway, Interim CEO, will host a 30-minute Facebook Live event in collaboration with The Mighty. Hemmenway, who is also author of the book “It’s not in my head: From wheelchair to marathon,” and Director of the INvisible Project, will talk about how she explains her pain to others and offer tips about sharing your pain story. Check The Mighty’s Facebook page for details=&2=& =&3=&
While summer may seem like a chance for taking a break from advocacy, it’s actually the perfect time to schedule in-district meetings with representatives and senators and educate them on issues related to chronic pain.
“The schedules of elected officials are extremely demanding, sprinting from committee hearings to voting and back again,” says Shaina Smith, Director of State Advocacy and Alliance Development . “Now that they are back home, their daily agendas are more open to sit down and meet with their constituents, including U.S. Pain advocates. This is the time to educate lawmakers and offer up ways they can support children and adults living with conditions that cause pain. Planting that seed as early as possible in the year will play a significant role once states are back in session and Congress is out of recess.”
U.S. Pain is sponsoring the upcoming feature-length film, Becoming Incurable, which follows the lives of three patients living with incurable illnesses. Filmmaker Victoria Suan believes that by sharing their stories, she can help create awareness for the hundreds of millions of individuals who suffer from chronic illness.
As part of the collaboration between U.S. Pain and Becoming Incurable, Suan recently created a four-minute film highlighting the stories of several U.S. Pain staff members and volunteers: Michaela O’Connor, Katie Golden, Terry Craig, and Julian Phillips. To see the video, click here.
This year, U.S. Pain’s KNOWvember campaign will highlight complementary medicine options, ranging from massage to acupressure to medical cannabis. Each day, U.S. Pain will be posting a fact about complementary medicine to provide people with chronic diseases options to research when piecing together a pain management plan.
So far, two webinars are scheduled:
- “Acupressure for Stress Relief: The Seva Stress Release Program,” with Regina Rosenthal, PT, an advanced practitioner and instructor of process acupuncture, on Nov. 20 at 7 pm EST. Register here.
- “Don’t Let Pain Limit You: Take Charge with Sound Data and Social Support” with Rachel Trobman, CEO and founder of the pain management app, Ouchie, on Nov. 9 at 12 pm EST. Register here.
More details and registration links for these events will be posted on U.S. Pain’s social media accounts.
U.S Pain’s next webinar for volunteers and members interested in volunteering will be held Nov. 21 at 1 pm, EST. The webinar will feature an informational presentation, “How to talk about pain so your doctor will listen,” given by Diane Cleverly, PhD. Cleverly has 20 years of medical communications experience and is the founder of Concierge Conversations, a coaching service that helps teach patients and providers how to better communicate with one another.
Earlier this fall, longtime New Jersey ambassador Jeannette Rotondi and her husband, Dennis, coordinated with Rutgers University’s Behavior Health Center to share U.S. Pain Foundation materials and information during the center’s Wellness Month, which coincided with Pain Awareness Month. Dennis is a staff clinician at the center and has volunteered alongside Jeannette since she joined U.S. Pain.