Programs and results
What we aim to solve
To help people living with pain realize that they are not alone. We will continuing to find ways to reach people living with pain to let them know there are ways to live a full life in spite of pain. While there may always be some level of pain, there are things that we can teach them, along with the health care treatment they are receiving, to improve the quality of life, increase function and reduce their sense of suffering.
Currently the thinking is the simple fix to take a pill, but one must become actively involved in their recovery to begin their journey from the mind set of a patient back to a person and look at all the modalities for managing pain.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Vets In Pain
With so many of our veterans returning home, many with injuries, there is an increased need to help them to return to a full life. One of the major obstacles for so many of them are their injuries which, for many lead to chronic pain problems. Our focus will be to validate the impact of chronic pain among veterans and their families as we increase knowledge about pain management among veterans so that they can improve the quality of their life and reduce their sense of suffering. There will be a number of events in select VA facilities to present workshops on pain management, starting and maintaining peer lead groups and maintaining wellness. We will work with the VA to provide information to both veterans and health care providers who care for them.
AUDIENCE:
• Veterans interested in learning more about chronic pain management
• Providers who want to learn more about ways to help individuals become actively involved in their wellness program
• Providers who want to learn how they can provide ongoing support to group facilitators.
PROGRAM:
Our plan is to visit at least ten VA facilities to present the training program. We will focus on the basics of the ACPA Ten Steps from Patient to Person and starting peer lead support groups will be the bulk of the training. Some of the areas that we will cover are:
• Importance of the person with pain to take an active role in the recovery process as they move from patient to person.
• Establishing a peer lead support group focused on coping skills for managing pain. We will cover what is needed from beginning to end.
• Maintaining the peer support group and keeping its focus on managing pain so one can live a full life in spite of the pain. Ways to help individuals become actively involved in their wellness program.
• Explore the basics of pain management as we focus on the ACPA Ten Steps from Patient to Person.
Understanding Migraines and How to Manage the Pain
Looking to our local ACPA support groups, we will identify the five venues where the event will take place. We will focus on communication skills between HCP and the person with pain, demonstrating our graphical tools including the Migraine Conversation Guide and phone app. In additional we want to help people understand what their role is in managing pain day to day by sharing the self-management skills using the ACPA Ten Steps from Patient to Person.
Some of the areas that we will cover are:
• Ways to help the individuals better communicate with the HCP with the use of graphical communication tools.
• Importance of the person with pain taking an active role in the recovery process as they move from patient to person.
• Understanding how to use the migraine tool and head map to improve the communication and relationship with their HCP
• Explore the basics of pain self-management as we focus on the ACPA Ten Steps from Patient to Person.
• Open discussion to answer questions from those attending.
Be Safe BE Prepared: A Plan for an Opioid Emergency
The American Chronic Pain Association posted a survey in January of 2017 that received responses from 703 individuals. Of these, 95% were taking, or knew someone who was taking, an opioid pain medication. Over 60% of respondents claimed to know the signs of an opioid emergency, but half reported never having talked to anyone about what to do in that situation, while 33% reported being talked to by a physician, 16% by a pharmacist, 9% by a friend or family member, and 16% reported “other.” Over 60% responded that they had heard of naloxone; 12% responded that they had access to it.
These results suggest that the opportunity exists to improve education for patients in managing opioid-related emergencies.
Learning Objectives
To ensure that people who take an opioid as part of pain management know what to do if an opioid emergency would occur, we plan to provide the following points:
Describe the scope of the problem of opioid related morbidity and mortality
Provide stats from the aforementioned survey
Identify how to have a discussion about an emergency plan with your provider if treated with opioids
List the signs of an accidental overdose
Educate how to recognize an opioid overdose crisis
Discuss what to do in case of an accidental opioid overdose
Provide step-by-step instruction on how to administer naloxone to yourself or someone else
List take away messages to avoid an opioid emergency
Program
We propose a non-branded graphical tool that will help anyone who is taking an opioid pain medication understand the importance of having naloxone at hand in case of an emergency. We will also develop a video to ensure that the message reaches the broadest audience. The project, Be Safe, Be Prepared would be housed on our web page and social media outlets and included in all presentations, including the Vets In Pain programs and professional meetings.
Where we work
External reviews

Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
To reach all those living with pain who believe there is no hope for tomorrow. To share the four decades of knowledge and tools and support systems we have in place to help them. We see the bigger problem as getting the word out, reaching those who have shut themselves off to the outside world. Those are the ones most in need of our services. We will continue our efforts to reach out to anyone wiling to help themselves.
What are the organization's key strategies for making this happen?
• Strengthening and further expanding our network of peer support groups.
• Continuing to develop our unique materials for self help and actively marketing them not only to individuals but also to professionals and institutions that serve people with pain.
• Providing a broader array of resources to consumers, caregivers, and the media via a redesigned web site.
• Representing and speaking for people with pain on committees, panels, commissions, and other groups where education, information, and action steps are being developed.
• Acting as a clearinghouse and point of contact for groups with an interest in pain, to create synergy and enhance the effectiveness of programs concerning pain and pain care.
What are the organization's capabilities for doing this?
Over the last four decades we have developed a vast network of peer support groups that are able to connect with people living with pain and teach them necessary self-management skills while at the same time providing the support they need. The most important element the ACPA groups provides is validation that they are not alone and there are many others who look "normal" but their lives are filled with pain.
We also have put all our of communication tools and educational videos on our web page (www.theacpa.org) and made them free to anyone who needs them. The suite of communication tools allow them to have meaningful conversations with the health care professional about their pain, the impact on their life and what the contributing factors to their pain, allowing them tracking these factors with the interactive graphical tools and share them via email with their health care provider.
Our web site, enjoying sometimes as many as two million hits a month, is robust and filled with the information people with pain need to take an active role in their treatment, learn more about their condition, find resources and obtain all the free communication tools needed to make the most of their time with their health care provider.
We address the needs of kids living with pain through our on line education program called, Growing Pains www.growingpains.org. It provides them with a platform that meets their needs and connects them with others their own age that share common issues when faced with a chronic pain. It also provides the same self management education as our web page in a format they can comprehend.
Our Vets In Pain program over the last six year has allowed us to visit more than 70 VA health care facilities providing a day long training on living with and managing pain. This program has been very popular and the demand is high for additional training. We have also done programs for agricultural works in rural areas and Native Americans on reservations. It is important to ensure that we seek out people form all walks of life and diverse groups.
We believe that getting out and talking with people face to face is the most powerful means to communicate our message . Because we are people who live with pain, our message is much more meaningful, we have lived through and understand what it like to have pain as your constant companion. We will continue our outreach to bring the message of hope and help to anyone who is willing to listen, no matter where they live.
What have they accomplished so far and what's next?
This year we introduced a new video for recognizing an opioid emergency and what to do in case of emergency. The video is posted on our web page and is now included in all our presentations. We have also made it available on DVD and distributed it at a recent American Pain Society meeting and will do the same at the upcoming American Academy of Pain Medicine.
We are ready to film a new video on migraines sharing their personal stories of many who live with them. We have have a expert who will provide information to our viewers. In addition we are holding five community educational events in Kansas, Pennsylvania, Florida, and two in California to educate those living with migraines and those who care for them. The main component of the program will focus on the self management skills to empower those who feel hopeless and often of out control.
We just received word that our abuse deterrent formulations (ADF) project was funded. We will be surveying our members on their understanding of what ADF are and what they know then using that infiltration to create an educational video on ADF.
There are several other educational projects in the works as we move forward in 2018. We are also involved in the International Alliance of Patient Organizations where our founder and CEO will become chair in August of the global patient organization. Her aim is to bring the issue of pain to the forefront of the conversation in all the patient organizations around the world.
We are also planning on more Vets In Pain events if the funding is available.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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AMERICAN CHRONIC PAIN ASSOCIATION INC
Board of directorsas of 1/9/2020
Dr. Donna Kalauokalani
Folsom Pain Management
Term: 2009 - 2020
Donna Kalauokalani, MD, MPH
Folsom Pain Management
Joanne Schneider, RN, PhD
Cleveland Clinic
Jonathan Cohen
Medical, PhD Student, University of Pittsburgh
Daniel Galia
Oracle
Nicole Kelly
Retired from benefits manager
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No