Lived experience is at the heart of U.S. Pain Foundation. Many members of our team and Board live with chronic pain themselves or have supported a loved one with pain. Together, we bring lived experience, professional expertise, and a shared commitment to improving the lives of people affected by pain.
U.S. Pain Foundation Team
Nicole Hemmenway
Chief Executive Officer
Under her leadership, U.S. Pain Foundation has expanded its peer support and educational programs, conducted national surveys capturing the real-world experiences of people with pain, and elevated patient voices through initiatives such as the INvisible Project magazine. Nicole frequently speaks at conferences, medical schools, and policy forums about compassionate care, access to treatment, and the importance of incorporating patient perspectives into research, policy, and decision-making.
Nicole was featured in a 2015 USA Today campaign and received the 2017 Unsung Hero Award. She is also the author of No, It Is NOT in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon.
Donna Gilbert, CPA, MBA
Chief Financial Officer
Throughout her career, Donna has held senior financial leadership positions overseeing financial reporting, budgeting, treasury, audits, tax compliance, internal controls, and organizational operations. Her experience spans hospitals, health and human service organizations, foundations, schools, and other nonprofit entities.
Donna also brings significant nonprofit governance experience, having served as Board Treasurer for Susan G. Komen, the Connecticut Association of Nonprofits, and InterCommunity, as well as in other board and trustee roles. She holds a bachelor’s degree in accounting and an MBA from Western New England University and is a Certified Public Accountant.
Casey Cashman
Director, Pediatric Pain Warrior Program
Living with chronic pain herself, including complex regional pain syndrome and Ehlers-Danlos syndrome, Casey understands firsthand many of the challenges faced by the families U.S. Pain serves. After sharing her story in a 2015 edition of the INvisible Project, she became increasingly involved with the organization and found a passion for helping other families navigate life with pain.
With a professional background in human resources, Casey also supports event planning and in-kind fundraising efforts for U.S. Pain. Her son, Tyler, created Points for Pain, a fundraising initiative that has raised more than $100,000 to support children with pain and their families.
Rebecca McKinsey
Director, INvisible Project & Lead Communications Specialist
Having lived with chronic pain and depression for more than a decade, Rebecca is especially interested in the connection between pain and mental health and believes deeply in the ability of storytelling to foster understanding and create change.
An award-winning journalist and former newspaper editor, Rebecca has written for publications across four states and two countries. She holds a degree in journalism from Ohio University. Outside of work, Rebecca enjoys reading, camping, kayaking, traveling, gardening, and caring for her houseplants.
Cindy Steinberg
Director, Policy & Advocacy
Cindy has spent years working to ensure that the experiences and needs of people with pain are represented in state and federal health policy. In Massachusetts, she has served on Governor Charlie Baker’s Opioid Working Group and as a Commissioner on the Massachusetts Drug Formulary Commission.
Nationally, Cindy has testified before the U.S. Senate HELP Committee, served on the federal Pain Management Best Practices Inter-Agency Task Force, and was appointed to the Interagency Pain Research Coordinating Committee. Her work has earned numerous honors, including the American Academy of Pain Medicine’s Presidential Commendation Award and a Mayday Pain & Society Fellowship.
Rachel Zentner, LPC
Director, Mental Health & Support
Rachel believes strongly in the importance of meaningful connection and creating spaces where people feel heard, understood, and supported. Her approach reflects an appreciation for the complex relationship between physical health, emotional well-being, relationships, and everyday life.
In addition to her work with U.S. Pain Foundation, Rachel operates a private therapy and coaching practice, primarily online. Outside of work, she is an early-morning writer and self-described coffee-time philosopher who enjoys deep conversations and time in the forest with her Labrador, Ripley.
Grant Rupert, MBA
Development & Engagement Manager
Grant brings experience in nonprofit development, fundraising, operations, and community engagement, along with a passion for using his professional skills to advance mission-driven organizations.
Prior to joining U.S. Pain Foundation, his nonprofit experience included work with the Greater Baton Rouge Food Bank and Special Olympics Louisiana, as well as fundraising efforts benefiting St. Jude Children’s Research Hospital. Grant brings both a strategic and relationship-focused approach to his work, helping U.S. Pain build connections that support its mission and long-term impact.
Samantha Noriega
Operations & Program Support Manager
Originally from South Africa, Samantha was a competitive swimmer and participated in the country’s Olympic trials in 1995. She later came to the United States on a swimming scholarship to Cleveland State University, where she studied communications with a focus in advertising and earned a minor in psychology.
Before joining U.S. Pain Foundation, Samantha owned and operated her own swim school, where she taught individuals to swim while overseeing the business’s daily operations. She brings that combination of organization, problem-solving, and a passion for helping others to her role at U.S. Pain
Michele Rice
Community Engagement Lead
After being featured in a 2015 edition of the INvisible Project, Michele attended a U.S. Pain Foundation Advocacy Summit, where she discovered a passion for advocacy. She was named U.S. Pain Foundation’s Ambassador of the Year in 2017 and has since shared her lived experience with health care professionals, advocacy organizations, policymakers, and others.
Today, Michele helps create opportunities for people with pain to connect, learn, advocate, and get involved. She facilitates peer support groups, supports volunteers and advocates nationwide, and leads U.S. Pain Foundation’s Building Your Toolbox educational series.
Janet Jay
Content Editor & Advocate
Janet has lived with chronic pain and depression since high school, experiences that inform both her advocacy and her writing. She has spent more than a decade working in journalism and communications, with work appearing in outlets including Vice Motherboard, MAKE Magazine, Popular Science, and others. She has also written publicly about her own experiences with chronic pain and treatment.
A graduate of Carnegie Mellon University, Janet is also a longtime chronic pain advocate and support group leader. Outside of work, she enjoys collecting records, reading, creating art and DIY projects, and spending time with her dogs.
Ellen Lenox Smith & Stu Smith
Co-Directors, Medical Cannabis Advocacy
Ellen lives with Ehlers-Danlos syndrome and sarcoidosis, while Stu has spent many years as her caregiver and advocate. Their experiences give them both the patient and caregiver perspectives on navigating complex health conditions and the health care system.
Longtime members of the U.S. Pain community, Ellen and Stu have shared their experiences with patients, caregivers, lawmakers, medical students, and health care professionals. They are passionate about helping others become informed and effective advocates and about increasing awareness and understanding of chronic pain, rare diseases, caregiving, and medical cannabis.
Board of Directors
Shawn Dickens, MBA
Chair
Shawn’s connection to the pain community is personal. His daughter, Melanie, lives with severe chronic pain related to complex regional pain syndrome and mitochondrial disease. After her diagnosis in 2010, Shawn and his wife, Laurie, connected with the U.S. Pain Foundation and became active members of the community.
Over the years, the Dickens family has participated in the INvisible Project, Advocacy Summits, and Pediatric Pain Warrior programs. They also organize the annual Crazy Sock Walk fundraiser to support organizations serving people affected by chronic pain.
Jessica Begley, MFT
Secretary
Jessica became involved with U.S. Pain Foundation in 2015 through her family’s personal experience with complex regional pain syndrome (CRPS). She has lived with the condition herself, now in remission, and her youngest daughter, Madi, also lives with CRPS. Their family was featured in the first INvisible Project: Kids and Family edition.
With more than 15 years of experience in fundraising and event planning, Jessica has also held volunteer leadership roles within her school and community. She is especially passionate about supporting the Pediatric Pain Warrior Program and helping families affected by chronic pain feel less alone.
Edward Bilsky, PhD
Treasurer
Dr. Bilsky earned his PhD in Pharmacology and Toxicology from the University of Arizona Colleges of Medicine and Pharmacy, where his work focused on opioid pharmacology, pain, and addiction. Throughout his career, he has built an extensive network of scientific collaborators and contributed to research and education in pain medicine.
His work has been recognized with numerous honors, including the American Osteopathic Association Research Mentor of the Year Award, the Faculty for Undergraduate Neuroscience Lifetime Achievement Award, and the American Academy of Pain Medicine Patient Advocacy Award. Dr. Bilsky first became involved with U.S. Pain Foundation in 2016 through the organization’s Advocacy Summit at the University of New England.
Ellen Lenox Smith
Board Member
Ellen lives with Ehlers-Danlos syndrome and sarcoidosis and has spent years navigating complex medical care. Her personal experiences have fueled her commitment to improving awareness, treatment, and support for others facing chronic health conditions.
A recognized patient advocate, Ellen has been involved in state and national efforts related to pain care and medical cannabis access. She has also authored books about her experiences and participated in research at the National Institutes of Health related to Ehlers-Danlos syndrome.
Through her advocacy, Ellen works to elevate the patient voice and encourage greater understanding of the realities of living with chronic pain.
Karen "Duff" Duffy
Board Member
In 1995, Duff was diagnosed with neurosarcoidosis, a rare form of sarcoidosis affecting the central nervous system. The condition resulted in partial paralysis and chronic pain and ultimately led her to become an outspoken advocate for people navigating serious illness and persistent pain.
Duff has written extensively about her experiences with illness, pain, resilience, and finding meaning in difficult circumstances. She is the author of three books, including the New York Times bestseller Model Patient: My Life as an Incurable Wise-Ass, and her work has appeared in national publications.
Through her advocacy and writing, Duff brings humor, perspective, and lived experience to conversations about chronic illness, pain, caregiving, and quality of life.
Debora Pellicano
Board Member
Throughout her career, Debora has held senior financial roles at organizations including AstraZeneca, Cencora, and Sanofi, where she served in leadership positions including CFO for Sanofi North America and its Specialty Care business. She currently serves as Chief Financial Officer of Cure SMA.
Debora has also devoted many years to patient advocacy. After her daughter was diagnosed with alopecia areata, she became involved with the National Alopecia Areata Foundation and went on to serve on its Board for a decade, including as Board Chair and CFO.
Her connection to the pain community is also personal. Debora’s late husband lived with chronic cervical pain for many years, giving her a deep appreciation for the challenges faced by people living with pain and those who care for them.
Nicole Hemmenway serves as an ex officio member of the Board of Directors.
Clinical & Medical Review Network
The U.S. Pain Foundation is committed to providing accurate, trustworthy, and accessible educational information. We work with health care professionals, researchers, and other subject-matter experts who provide expertise and review educational content within their areas of specialization. This collaboration helps us translate complex health information into practical, understandable resources for people living with pain.
