U.S. Pain Foundation to Change Leadership

U.S. Pain Foundation to Change Leadership

By Ed Coghlan.

The nation’s largest pain advocacy organization is changing leadership.

Nicole Hemmenway has been appointed Interim Chief Executive Officer of the U.S. Pain Foundation. She replaces Paul Gileno who resigned at the request of the Board of Directors.

Interim CEO, Nicole Hemmenway

Hemmenway has been a key member of the U.S. Pain Foundation since 2010. Over the years, she has managed many of the organization’s events, cultivated the development of numerous programs and services, and overseen the majority of its communications and education initiatives. She also directs the INvisible Project, an online and print magazine that highlights the courageous stories of people living with pain. In addition, Hemmenway founded Heroes of Healing, an online support group.

Beyond her work with U.S. Pain, Hemmenway has been a leading voice in chronic pain awareness and an advocate for patient rights for many years. Having lived most of her life with complex regional pain syndrome, she overcame what doctors told her was a hopeless situation and was able to thrive. She is a motivational speaker and the author of a memoirNo, It Is NOT In My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, in which she shares her experiences navigating the medical system.

The organization did not say why Gileno was asked to step down.

Hemmenway told U.S. Pain Foundation members in an email:

“As an organization, we are looking ahead to the future. We remain fully dedicated to continuing to uphold our mission to educate, empower, connect and advocate for people with pain through our wonderful programs and services.

“Some examples of upcoming programs and events include: our Real Hope, Real Heroes gala this weekend; a training program for chronic pain support group leaders in June; our Pain Awareness Month campaign and related activities this September; and our first retreat for pediatric patients this November, to name a few.”


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Authored by: Ed Coghlan

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Thank you, Patrica Bowls. You stated clearly and exactly what is and has been happening for quite a number of years.
I am not familiar with the non profit organization noted in this piece but as a CPP support your statement.

David Becker

Paul set an example of unselfishness for all to follow. He had money and a very painful condition and could have spent his money just on treatments or on his hobbies or interests.
Though i have been critical of Pauls ideas id be wrong not to acknowledge his unselfishness and dedication to helping others.

Patricia Bowles

As a very loyal &, supportive reader of NPR I am frustrated & concerned by this announcement. that the board asked the CEO to step down. It has been a nightmare ever since the CDC used PROP’s misleading data to attack our doctors, pharmacies & people with chronic pain ignoring the real causes of addiction and throwing the blame onto people that have already suffered enough. Why are your loyal patrons not deserving of an explanation as to why this change was made – he has a right to personal reasons, but considering how proactive the organization has been he must have been doing something right. I have relied on these organizations & I do not want to feel more doubt & fear when it comes to the resources we as pain patients desperately need & rely on to help us move forward. So much damage has already been done and it was not exactly a picnic before the CDC listened to Kolodny & the Media not bothering to investigate the legitimacy of the false claims in blaming prescriptions vs illegal narcotics. With all the hoops we had to jump through for decades to get pain medication at adequate strengths & dosages before addicts started stealing, altering & abusing any & every drug they could distorting the the cause of addiction. . The real causes are never addressed and addiction specialists know that it has never been caused because of easy access to legal prescriptions or doctors making a person manipulate & abuse a prescription & shoot up heroin. Those of us who have spend our lives struggling to manage our pain would like to know why these lies about doctors & prescriptions continues to be a platform.

I too am disturbed by the Foundation’s statement. It’s Board asked it’s Founder to step down, but won’t give any reasons for asking this? If Microsoft’s Board asked Bill Gates to step down, people would ask the same questions!

That said, what pain patients need to learn, is the skill of Self Advocacy. The real value of groups like US Pain Foundation, is that they provide a forum where we can practice speaking up for ourselves. No organization can truly speak for me, if I choose to suffer in silence and say nothing. Whatever changes the Board at US Pain Foundation wants to make, will meet with approval from patients when the changes are good, and will be criticized by patients when the changes are not good. That is how it should be. Those who claim to speak for us, do not get a free pass. It was, after all, when PROP and it’s leader Andrew Kolodny pretended to speak for pain patients by demanding to take away our medicine, that many of us found our voices and demanded reform at the CDC, to retract PROP’s false and dangerous “Opioid Prescribing Guidelines”‘ and stop calling them CDC policies.


I am saddened to have learned of Paul’s resignation as CEO of US Pain. While I have no doubt US PAIN will continue on and carry out the intended missions of pain support, programs and advocacy, I came to know Paul very well and it is difficult to imagine he is no longer at the helm.

In 2014, I was honored and privileged to present Paul with an Award from a Pharma which recognized outstanding contributions to pain advocacy, policy changes and advancements in pain. This highly distinguished Award was the first ever Award to be presented by the respective Pharma.I came to know Paul well after the Award presentation. I enjoyed many collaborations with him and others within the US Pain Found.

Paul’s contributions, tireless dedication and commitment to pain advocacy and support were astounding. I applaud and deeply appreciate his efforts. Thank you, Paul, for fighting on behalf of pain pts. everywhere. Godspeed to your future endeavors. You will be missed.

I wish all the best and continued support to the USPain Foundation.

Most sincerely,
Susan Stephenson, RN BSN CCRN
Richmond, VA


Well something needs to change ,those of us who have chronic pain, are just trying to live as comfortably as we can. I feel that there really is no voice that is listening. Government control is what I see going on ,

Wendy Munson

Secrecy is troubling. Those of us with chronic pain are mistrustful because we have been mistreated & misrepresented. To have our advocacy group change leadership under mysterious circumstances leads to suspicions of redirected mission. What was philosophy/mission under Gileno & how will it differ under Hemmenway? Or was it merely some character defect or malfeasance on the part of Gileno…oddly, that would be less unsettling. More information/transparency is needed here. Thanks.

David Cole

Congrats to Nicole, and thank you for your service to the pain community


Paul Gileno deserves a tremendous amount of credit for building US Pain Foundation into what it is today. Specifically, I can personally say that the many times I emailed US Pain, he personally answered my emails, and always in a prompt, professional way. I know he founded US Pain Foundation and worked tirelessly to build it into a powerful organization. I hope he didn’t make any egregious mistakes, but he deserves far more credit than this press release gives him. Thank you, Paul Gileno!