Our Team

U.S. Pain Foundation was created by people with pain, for people with pain. All of our staff are either people with pain or caregivers of people with pain. That means we truly understand the challenges people with pain face and can better identify ways to help.

Board Members Our Team

Board Members

U.S. Pain Foundation Board of Directors is composed of individuals with unique skills and talents. All board members are committed to serving those
 with pain by addressing the challenges the community faces.


Shawn Dickens
Chairman

Shawn Dickens, MBA, is a Senior Program Manager at Leonardo DRS, specializing in government defense programs. He is a graduate of Worcester State College with a Bachelor’s degree in Computer Science and holds an MBA from the University of Miami. He also maintains certification as a Project Management Professional.

Shawn has been a staunch advocate for people with chronic illness for nearly a decade. His daughter, Melanie, lives with severe chronic pain stemming from multiple diagnoses, including complex regional pain syndrome and mitochondrial disease.

When she was first diagnosed in 2010, at the age of 10, they searched desperately for answers. One of the first tools Shawn and his wife, Laurie, found was Nicole Hemmenway’s book “No, It Is Not In My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon.” They reached out to Nicole and learned about the U.S. Pain Foundation.

Since then, Shawn, Laurie, and Melanie have been featured in two editions of the INvisible Project— in 2015 and in 2016. They have attended multiple Advocacy Summits and are integral parts of the Pediatric Pain Warrior retreats. Most recently, Melanie has been involved in helping develop the curriculum for the retreats.

Spearheaded by Melanie, the Dickens family also holds an annual awareness event and fundraiser, the Crazy Sock Walk, splitting the proceeds between U.S. Pain Foundation and the Reflex Sympathetic Dystrophy Association.


Ellen Lenox Smith
Board Member

Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island. She is Co-Director of U.S. Pain Foundation’s Medical Cannabis Advocacy Program alongside her husband, Stu. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to medicine.

Ellen suffers from two rare conditions. One is a degenerative collagen disorder called Ehlers-Danlos syndrome. This crippling disease allows her joints to become easily dislocated, causing vice-like pain and confining her on and off to a wheelchair. She presently has endured 23 surgeries and countless visits to her doctors. Her second condition is called sarcoidosis, which has allowed enlarged lymph nodes and granulomas in her lungs. Both these conditions are presently not curable.

While having a long and distinguished career, predominantly in the field of education, Ellen has devoted much of her recent time to advocacy. She serves on the board for the Rhode Island Patient Advocacy Coalition, is the author of two books, and in 2006, was accepted into the Connective Tissue Research at the National Institute of Health to help search for a cure to Ehlers-Danlos syndrome.


Marv Turner
Board Member

Marv Turner is the owner of Yellow Dog Productions, a video production company. He has collaborated with U.S. Pain on several projects over the years, particularly through the Pediatric Pain Warrior Program, and was so impressed with the organization’s efforts that he decided he wanted to take a more active role.

Turner’s award-winning career in videography includes two Emmy Awards and seven Telly Awards. Along with the four years he spent filming for the New York Mets, he has spent 21 years shooting video around the world with stops in Uganda, Honduras, Israel, Rwanda, the Congo, Haiti, El Salvadore and Mexico, to name a few. Turner also was the Director of Photography on the documentary, “HIV Goddess” and co-director and co-videographer on “The Serious Road Trip,” about a boy and his search for chocolate during the Bosnian civil war.

A father of three sons, Marv and his wife, Beth, reside in Madison, WI. Beth, a writer and producer, has also become an advocate for the chronic pain community, hosting personal storytelling workshops during the 2019 RetreatMigraine and at the first Pediatric Pain Warrior retreat in 2018.

 


Edward Bilsky, PhD
Treasurer 

Edward Bilsky, PhD, is Provost, Chief Academic Officer, and Professor of Biomedical Sciences at Pacific Northwest University of Health Sciences. He received a PhD in Pharmacology and Toxicology from the University of Arizona Colleges of Medicine and Pharmacy in 1996, with a concentration in opioid pharmacology, pain, and addiction. He is an expert in opioid pharmacology and early-stage drug discovery and development, collaborating with scientists around the world.

He was awarded the 2011 American Osteopathic Association Research Mentor of the Year Award, is a recipient of the Faculty for Undergraduate Neuroscience Lifetime Achievement Award, and received the 2014 Patient Advocacy Award from the American Academy of Pain Medicine. Dr. Bilsky first collaborated with U.S. Pain in 2016, when he was an integral part of hosting an Advocacy Summit at the University of New England. He and his wife have three children and currently live in Yakima, Washington. 


Jessica Begley, MFT
Secretary

Jessica Begley, MFT, is a marriage and family therapist and child development specialist who is in the process of earning her PhD in Psychology. She previously taught children with learning disabilities, was a school counselor for an alternative high school, and continues to offer pro bono therapy sessions. Ms. Begley became involved with U.S. Pain in 2015 due to her personal experience living with complex regional pain syndrome. While she is fortunate to be in remission, her youngest daughter, Madi, also lives with the condition. She and her family were featured in the first INvisible Project: Kids and Family edition (you can read their story here).

She has an extensive background in fundraising and event planning, stemming from her 15+ years of experience volunteering as vice president of fundraising for the school PTO and as a member of the Whites Chapel United Methodist Church Early Childhood Board. Ms. Begley is a longtime supporter of the Pediatric Pain Warrior Program, frequently lending her time and energy to helping provide hope to other families. She currently resides in Southlake, Texas, with her husband and two daughters. 


Nicole Hemmenway
Ex Officio Board Member
CEO

Nicole Hemmenway currently serves as CEO of the U.S. Pain Foundation, and directs the INvisible Project, an online and print magazine that highlights the experiences of people living with pain. Nicole is also an author and motivational speaker. Her book, No, It Is NOT in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, details her struggles and triumphs in dealing with complex regional pain syndrome, a debilitating neurological disorder. In September 2015, Nicole was featured in a campaign in USA Today in recognition of her role as an advocate for those living with chronic pain; and in 2017, she received the Unsung Hero Award for her work in the pain community. Nicole lives in the Bay Area with her husband and three young sons.


Staff members

Created by people with pain for people with pain, our team has a personal connection to those we serve: each staff member is either a person with pain or a caregiver of someone with pain.


Nicole Hemmenway
CEO
Director of INvisible Project

Nicole Hemmenway currently serves as CEO of the U.S. Pain Foundation, and directs the INvisible Project, an online and print magazine that highlights the experiences of people living with pain. Nicole is also an author and motivational speaker. Her book, No, It Is NOT in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, details her struggles and triumphs in dealing with complex regional pain syndrome, a debilitating neurological disorder. In September 2015, Nicole was featured in a campaign in USA Today in recognition of her role as an advocate for those living with chronic pain; and in 2017, she received the Unsung Hero Award for her work in the pain community. Nicole lives in the Bay Area with her husband and three young sons.

Contact:
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Emily Lemiska
Director of Communications and Educational Programming

Emily Lemiska joined US.Pain Foundation in early 2016 as Associate Director of State Advocacy. In 2017, she moved into a new role as Director of Communications and Educational Programming. In this role, she oversees the organization’s websites, newsletter and email messaging, social media accounts, blog, as well as several educational initiatives, including the Pain Education Portal (PEP) Talk series.

Prior to U.S. Pain, Emily worked as an Internal Communications Officer at Massachusetts General Hospital. She then spent several years as a freelance writer and editor for various health and higher education clients.

Emily is a graduate of Northeastern University with a bachelor of arts in English and a minor in political science. She lives in Connecticut with her husband, Dan, and beloved tuxedo cat, Henry.

Contact:
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Casey Cashman
Director of Fundraising and the Pediatric Pain Warrior Program

Casey Cashman uses her voice to fight passionately for the rights of people with pain, especially children. She has lived most of her life with multiple, serious health conditions, including reflex sympathetic dystrophy and Ehlers-Danlos syndrome, among others. 

Over the years, she began to connect more with patient organizations and realized she had a passion for helping others like her. In 2015, she was featured as a participant in the INvisible Project, which led to her joining the U.S. Pain Foundation as a staff member.

Before U.S. Pain Foundation, Casey spent many years working in Human Resources. She brings this knowledge and experience to the table in her role as director of the Pediatric Pain Warriors Program, where she provides compassionate support to kids with pain and their families as they travel along their pain journeys. 

Casey also spearheads U.S. Pain’s fundraising efforts, and has helped create various programs and collaborations designed to support the organization’s free programs and services

Her son, Tyler, is also a budding advocate for the pain community. In honor of his mom, he founded Points for Pain, a fundraising program that has raised more than $100,000 for pediatric patients. 

Contact:
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Cindy Steinberg
National Director of Policy & Advocacy

Cindy Steinberg is the National Director of Policy and Advocacy for the U.S. Pain Foundation, Policy Council Chair for the Massachusetts Pain Initiative and a nationally recognized leader in pain policy. She is a frequent speaker at national meetings, conferences, and government hearings and is interviewed regularly in the media. Her dedication to pain advocacy was sparked when she sustained a severe crush injury that left her with daily back pain.

In February of 2019, Cindy was invited to testify at a hearing on “Managing Pain During the Opioid Crisis” of the U.S. Senate Health, Education, Labor and Pensions (HELP) Committee by Chairman Lamar Alexander and Ranking Member Patty Murray. Cindy was the only patient and pain advocate invited to testify.  In May 2018, Cindy was appointed by the U.S. Secretary of Health and Human Services, Alex Azar, to serve on the Pain Management Best Practices Inter-Agency Task Force created by Congress. Cindy was appointed to a three-year term on the Interagency Pain Research Coordinating Committee (IPRCC) in 2015 by the U.S. Secretary of Health and Human Services, Sylvia Burwell. The IPRCC the highest-ranking pain policy oversight committee in the United States. In addition, Massachusetts Governor Charlie Baker appointed her to serve on his Opioid Working Group and in 2017 he appointed her to be a Commissioner on the Massachusetts Drug Formulary Commission.

Cindy is the recipient of numerous accolades for her contributions to the field of pain management, including the American Pain Foundation’s Presidential Medal, the State Pain Initiative Champion Award, the Grunenthal Unsung Hero Award, and the American Academy of Pain Medicine’s Presidential Commendation Award. Cindy was selected as one of six leaders in the field of pain management to receive the Mayday Pain & Society Fellowship for 2013-2014.

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Shaina Smith
Director of State Advocacy & Alliance Development

Starting as a volunteer for U.S. Pain in 2010 at the onset of her chronic pain, Shaina was able to find the support and validation she needed through the organization. Finding her true calling to serve the pain community, various projects and campaigns were built with Shaina’s creativity while she served as the organization’s Director of Ambassadors. As the Ambassador Program grew, so did the organization’s need to focus its energies and attention within the state advocacy arena.

In 2015, Shaina transitioned into her current role as Director of State Advocacy & Alliance Development. This has allowed her the opportunity to further enhance U.S. Pain’s intent to provide hope for pain patients in the area of fair access to treatment issues and basic patient rights. Shaina has been able to energize our Advocacy Warriors to take action on proposed legislation through advocacy eAlerts and the relationships she has built with like-minded coalitions and working groups across the nation.

When she isn’t advocating for residents of her town or the pain community, Shaina champions for the fair treatment of animals and has several rescue animals. Shaina also enjoys traveling with her husband and son, singing or playing guitar with her sisters and photography.

Contact:
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Gwenn Herman, LCSW, DCSW 
Director of Pain Connection

A social worker by training, Gwenn Herman has dedicated her career to offering much-needed hope to people with pain. Gwenn intimately understands their challenges, having lived with chronic pain for more than two decades as the result of a car accident. 

Frustrated by the lack of resources for people with pain, in 1999, she founded Pain Connection, a national network of chronic pain support groups, support group leader trainings, and more. Over the years, Gwenn has developed an evidence-based support group model, one that enables participants to harness their own innate healing abilities, take a more active role in their health care, and improve their overall quality of life. In 2016, Pain Connection joined forces with U.S. Pain Foundation and has continued to expand its offerings. 

In addition to her direct work with patients, Gwenn is the co-author of the book, Making the Invisible Visible: Chronic Pain Manual for Health Care Providers, and has been featured in various news articles and projects on chronic pain. 

In 2018, she was appointed to the Interagency Pain Research Coordinating Committee, the highest-ranking pain policy oversight committee in the country. Most recently, she received a grant from the Massage Therapy Foundation to study the effect of massage on the need for pain medications. 

She currently lives in Tucson, AZ, with her husband, Malcolm, and two pets.

Contact:

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Ellen Lenox Smith and Stu Smith
Co-Directors for Medicinal Cannabis Advocacy

Ellen Lenox and Stuart Smith are the co-directors for Medical Cannabis Advocacy for U.S. Pain Foundation. Ellen lives with two rare conditions: Ehlers-Danlos syndrome and sarcoidosis. Stu has and continues to be Ellen’s caregiver and together, they raise awareness surrounding invisible pain and the effectiveness of medicinal marijuana for pain patients.

Ellen and Stu have been a part of U.S. Pain since its inception and both are incredible resources for those first diagnosed with a rare condition, family members and caregivers, patients or advocates who wish to learn more about the medicinal benefits of cannabis. They also speak with interested pain warriors about ways to effectively speak before lawmakers, medical students and healthcare professionals.

In addition to inspiring others through their passion, Ellen hosts an annual state pain awareness event within her state, inviting reputable guest speakers from the medical profession, as well as patients and state employees. Their daily efforts are directed at improving pain management, allowing for personal renewal and the most essential element to wellbeing, a sense of hope.

Ellen and Stu live in Rhode Island on a small, organic farm with Ellen’s service dog Maggie, an adopted rescue dog named Lily and have raised four, now adult, sons.

Contact Ellen:
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Contact Stu:

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Malcolm Herman, JD
Director of the National Coalition of Chronic Pain Providers and Professionals (NCCPPP)

Malcolm Herman worked as an attorney in Maryland for 25 years. After his wife, Gwenn, was injured in an automobile accident, Malcolm became active in the chronic pain community and assisted Gwenn as she created Pain Connection, a nonprofit corporation in Maryland, which is now part of U.S. Pain Foundation. Malcolm previously served as a director of Pain Connection.

Malcolm is now director of the National Coalition of Chronic Pain Providers and Professionals (NCCPPP), a program of U.S. Pain Foundation. The coalition is a network of healthcare providers, professionals, and organizations working on behalf of individuals with chronic pain, their families, and their caregivers. NCCPPP offers opportunities for education and discussion groups with leading experts; training on the most innovative treatment approaches; developing collaborations and partnerships; networking to meet, share, and exchange referrals; and access to patient-centered resources.

Malcolm also participates in the training of chronic pain support group leaders, focusing on caregivers and family members.

Contact:
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Lori Monarca
Executive Office Manager and Director of the Ambassador Program

Lori Monarca is the executive office manager and director of the Ambassador Program for the U.S. Pain Foundation. She efficiently handles all the office managerial tasks as well as assists with the planning of events. Her organizational skills keep the foundation running smoothly.

Prior to coming on board with U.S. Pain, Lori worked as a paraprofessional assisting children with learning disabilities and special needs in an elementary school. For seven years, she dedicated her energy to being a duty-aide. She enjoyed influencing young lives and being a part of their growth and development.

Living with migraines herself, Lori takes pride in her work with U.S. Pain. She recognizes the need for creating pain awareness while also empowering those suffering, which is why she goes above and beyond her role title. Besides her hours helping the pain community, Lori likes to spend her free time with her two wonderful daughters. She also enjoys baking, scrapbooking and attending Zumba classes.

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 Michaela O’Connor
Community Outreach and Communications Specialist

Michaela O’Connor is a chronic pain warrior and advocate. She has bilateral trigeminal and occipital neuralgia, dysautonomia (POTS), cervical dystonia, gastroparesis, and an undifferentiated mixed connective tissue disorder. In 2013, she was chosen to be a participant in the INvisible Project. Showing a strong desire to play a large role in helping fellow chronic pain patients, she became a U.S. Pain Ambassador for the state of California. It was through this role that Michaela became an official part of U.S. Pain’s team.

Michaela graduated from the University of California at Davis in 2009 with a BS in Political Science and a double minor in History and War and Peace Studies. She is an avid writer and plays the guitar in her free time. She is also a huge sports fan, especially of her beloved San Francisco Giants baseball team, whom she often refers to in her writing. Outside of U.S. Pain, her favorite job is the role of aunt to her three nephews and four nieces, with whom she spends most of her free time. She resides in Northern California.

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Katie Golden
Migraine Advocacy Liaison

Katie M. Golden is a professional patient, writer, and advocate for those living with having migraine, headache, and cluster diseases.  When she turned 30, her episodic migraine attacks that started as a child, became a chronic, everyday occurrence. This debilitating disease ended her successful professional career in finance. She found purpose in writing about her disease and working to live a fulfilled life with chronic migraine and pain. In addition to her role with U.S. Pain Foundation, Katie is a staff writer for Migraine.com, senior contributing writer for the INvisible Project Magazine, steering committee member for CHAMP (Coalition For Headache And Migraine Patients), and has her own blog at GoldenGraine.com. She has found power in the phrase: “Never let your pain go to waste.”

Contact:

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Jose Garcia
Web Design and Graphics

Jose Garcia is a graphic designer who creates visual materials for print and for the web. He loves to communicate ideas from the organization that can inspire, inform, and engage those who are in pain.

Jose has over 15 years experience owning a design firm and working with a variety of companies and organizations. He has worked with skateboarding companies, small family owned businesses, tech industry, and nonprofits. He brings a different perspective to the team and enjoys coming up with creative materials for the organization.

Jose immigrated to the California Bay Area from Guatemala when he was 5. When he is not creating new designs he is either binging tv shows with his wife, golfing, riding his motorcycle, enjoying any sport on TV, or playing with his dog, Doctor Frankenstein.