U.S. Pain Foundation is a patient-based organization. In late-2006, Paul Gileno founded the CT Pain Foundation focusing on patients helping patients through support and community interaction. He realized after navigating the medical system alone for four years dealing with his own pain that it was time for change. It became clear to him that almost all people with chronic pain identify with each other. While diagnoses might differ, the experiences and feelings endured are all very similar.
There needed to be a foundation centered on the lives of people with pain. In 2010, the flagship program of the organization, the INvisible Project, was established to created chronic pain awareness through photography and story. The project became a huge success catapulting Paul’s grassroots organization in to the national spotlight.
Thus, on January 11, 2011, CT Pain Foundation went national … becoming the U.S. Pain Foundation.
Who makes up the organization?
U.S. Pain was created by people with pain for people with pain. Our team consists of individuals directly impacted by pain. As a patient-based nonprofit, we understand firsthand the challenges, frustrations and emotions those afflicted with pain endure each day. We see that we need one another for support, sense of community and hope. By coming together, we not only learn that we are not alone but also that our voices hold power.
While we have directors and advisors, it really is the entire pain community – the 100 million Americans suffering – that make up U.S. Pain Foundation. We are all part of the solution and each one of us can make a significant impact on the future of pain care.
Do those with larger U.S. Pain leadership roles still have pain?
The answer is a resounding, “Yes.”
For the majority of our team, the physical pain has not changed but rather the way we view and approach it has transformed. While our journeys to empowerment are quite different, each of us came to the realization that there was a fundamental difference between sufferingandpain. With this newfound awareness, we each have been able to function and live fulfilling lives with pain.
We surround ourselves with people who understand. Each of us has days when we need to take a step back and focus on our health. And this is okay. Our personal health is always the main priority. Yet what has surprised most of us is discovering how much we feel better due to taking an active role in advocating, inspiring and being a part of this pain family.
We aim to lead by example. We want those of you who feel isolated, misunderstood and rejected to know that it is never too late to walk this pain journey together; and together, we will get through it. U.S. Pain is here for you.
How did we come up with our programs?
The programs U.S. Pain offers the pain community are unique. We focus our efforts on creating initiatives that will have a direct benefit on you: the pain warrior. Using our personal experiences with pain as a guide, U.S. Pain developed positive programs that empower, educate and inspire.
We believe the impact our programs have had and continue to have on those debilitated by pain is strong and empowering. For those who once felt defeated, they now feel strong. For those who felt misunderstood and not heard, they are feeling recognized and validated.
Our goal is to empower those living with pain. Becoming empowered carries over into all aspects of ones’ life. It leads to becoming proactive in ones’ treatment plan, it allows us to find meaning in today, it gives us hope for tomorrow. Our programs have been designed to inspire each of living with pain to become our own warrior.
What work is U.S. Pain Foundation doing in the pain community? What effect are you having on changing the current stigma surrounding the issue of pain?
U.S. Pain strives to be the leading source of information and hope for those with pain. We are nationally recognized as a true patient-advocacy organization making sure people with pain are heard, validated and empowered. This is something we take great pride in. That is why we see it as our responsibility to continue the productive work we do to generate more change and good.
U.S. Pain is committed to pushing the envelope and raising the pain awareness movement in order to make a direct difference on the lives of people with pain. To accomplish this, we emphasize our efforts on connecting, informing, empowering and advocating.
We make sure to connect.
U.S. Pain sponsors free patient-education events as well as supports local and online support groups so care champions and those with pain have the opportunity to connect. By meeting others like yourself – who are struggling to redefine their lives – you discover that together we can overcome any obstacle. It is as a community that we can begin to regain strength, power and purpose.
As we all know, it is up to us to become informed during our journeys with pain. Education and knowledge are key factors in becoming proactive in your personal recovery. U.S. Pain Foundation provides credible information about diseases, treatment options and regulatory issues. We offer helpful insight into how to define pain in ways a doctor or care provider can comprehend, and we share positive techniques for communicating with friends and family.
We know living with pain is emotionally, mentally and physically draining. There are times when it is difficult to be optimistic for a better future when facing judgment, ridicule and isolation.
That is why U.S. Pain is here to recognize your pain and validate your stories. We want to help you learn to express your creativity and discover new interests so we provide valuable information about local, regional and national events that we feel will make a difference in your life.
It is our belief that by attending events, connecting with others or becoming involved in activities that make you happy, you will begin to see your own strength, courage and resilience. We want you to hold onto hope, believe in the unimaginable and view yourselves as the pain warriors in which you are.
There is a sense of pride and satisfaction that comes from making a difference. While U.S. Pain wishes no one had to suffer, we believe those who endure such pain have the ability to use their nightmare for a greater purpose. Each of us has a different story to share, a different experience that can shift perceptions and generate change.
U.S. Pain Foundation helps you have your voice heard. We provide you information to navigate governmental matters such as state-level advocacy legislation pertaining to unfair practices against people with pain, Worker’s Compensation issues and Social Security Disability Insurance. We care about the future of healthcare so we strive to educate those in positions of office on the importance of funding more pain research for better options in treatment and prevention.
The work we have been involved in has had a tremendous impact on the pain community. Because of YOU, U.S. Pain has had patient advocates testify in thirty-seven states. We have been able to change laws that benefit those with pain as well as other patients in Connecticut, New Hampshire, Louisiana, Florida and New York to a name a few. We continue to be invited to showcase the INvisible Project at state capital buildings, medical conferences and patient-education events. We have distributed over 40,000 pain warrior bracelets. We receive hundreds of emails a month from individuals sharing their stories.
As you can hopefully see, our commitment is to YOU. We want to show that we are dedicated to the mission and goal of being created by people with pain for people with pain.
Do you collaborate with other groups and organizations?
Yes! It has always been our goal not to recreate the wheel. We choose to focus our energy and resources on new programs while teaming with other incredible groups who are also making a substantial impact on bettering the lives of people with pain. Any time we can lend our support for this cause, we do.
U.S. Pain recognizes this is a team effort. We feel strongly that each organization serves a purpose and plays a role in creating pain awareness, educating care champions as well as the public, advocating for patients and furthering pain research. We choose to align with groups because the more people on board, the stronger our stance and position becomes. We all are working toward the same goal. This is why we need to collaborate and join forces for the common good of people with pain.
How can I become more active in my pain journey?
This is a question we receive daily, and the underlining is answer is through empowerment. It truly is key to taking control of your pain and living a proactive, fulfilling life again.
How do you become empowered? This is slightly different for each of us, but it revolves education and finding your voice. After years of struggle, most people living with pain begin to feel defeated. U.S. Pain gets how difficult it is to keep searching for help and seeing meaning when pain and agony are relentless factors in your life. That is why we offer tools and support as well as host events that inspire you to take action. We show you how to pick up the pieces and move forward. To see that you are part of recovery team, and your role within the doctor-patient relationship is crucial to finding answers.
U.S. Pain validates your suffering and challenges while encouraging you to become an active participant in your recovery. We want you to see your worth, own your strength and become your personal pain warrior and inspiration. We want you to see yourself as we see you.
Where do I go if I am in crisis?
If you are in crisis or considering harming yourself, we ask you to take one of the following steps immediately. Explain how you’re feeling. Remember part of being strong is acknowledging when to ask for help.
You Are Not Alone.
Call a suicide/prevention crisis hotline (800-784-2433 or 800-273-8255)
Assistance if you are deaf or hearing impaired? (800-799-4TTY)
Para obtener asistencia en español, llame al (888-628-9454)
Call your mental health counselor
Call your medical doctor
Go to a hospital emergency room
The Department of Veterans Affairs (VA) operates a national suicide prevention hotline and live online chat option for veterans to ensure veterans with emotional crises have round-the-clock access to trained professionals.
Needing to Talk with Someone If you are feeling sad or overwhelmed, it might help to talk to someone. A family member, friend, therapist, spiritual sponsor or fellow pain friend are here to listen. Remember that you are not alone.
To find a social worker, psychologist or counselor, please click on the following:
To fully reach those afflicted by pain and medical conditions as well as offer support, U.S. Pain Foundation needs to be able to grow and expand our programs. In the past four years, we have succeeded in keeping overhead to a minimum so donations can directly improve the courageous people living with pain. This will continue to be the way we organize and maintain our organization’s structure.
U.S. Pain is a 501 (c)3 non-profit tax-exempt organization. Our federal ID # is 26-2703521. As we take pride in being transparent, we would like you to know a bit more about our funding and distribution of funds. Each member on the Board of Directors volunteers his or her time. Besides individual charitable donations we receive, U.S. Pain also receives grants and educational funding from various corporate sponsors.
U.S. Pain appreciates each and every donation we receive. No matter how big or small, each dollar ensures that the 100 million Americans living with pain receive validation and proper medical care. Donating options include: