Patients are at the center of everything we do.
At the FNIH, we are driven by our passion to help patients live longer, healthier, lives – regardless of who they are, where they live and what disease they have. When we incorporate their perspectives into our work, the result will be faster medical breakthroughs for some of today’s more pressing health challenges.
The FNIH is committed to engaging patients and their families in the research process. We work closely with our Patient Ambassadors and Patient Engagement Council to ensure that the patient perspective is taken into account when designing clinical trials and other research initiatives.
Stories from our Patient Ambassadors
Living with Schizophrenia, and Thriving: A Conversation with Carlos Larrauri
Psychosis and other serious mental illnesses are daunting and carry with them a major stigma. Science is still grappling with how to better understand and treat serious mental illnesses, as are the social circles and communities who support those with mental illnesses.
Carlos Larrauri is striving to overturn this stigma and advance both the science and community support structures around serious mental illnesses. Having been diagnosed with and treated for schizophrenia since college, Carlos has the unique ability to lead with lived experience and help patients, clinicians, and families better understand, treat, and maintain recovery from psychosis and other mental illnesses.
Today, Carlos serves as a co-chair of the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ) program, a major public-private partnership between NIH’s National Institute of Mental Health (NIMH) and partner organizations from industry and nonprofit sectors, managed by the FNIH. As a leader in addressing this important unmet neuropsychiatric need, and one offering a unique perspective, Carlos uses patient advocacy and storytelling to raise awareness and propel advancement in this therapeutic
Janet ChurchSjogren’s Disease
From Patient to Advocate: Janet Church’s Journey Living with Sjögren’s Disease
Approximately four million Americans are affected by Sjögren’s Disease, yet nearly half of them are undiagnosed. Janet Church, President & CEO of the Sjögren’s Foundation, and a patient living with Sjogren’s disease, hopes to change that.
Janet’s long journey to diagnosis began in 1999, when she was experiencing severe sinus infections and fatigue. Despite her symptoms, doctors told her she was simply tired and burned out from a long career running her own company in the technology sector in Seattle. She sold her company and moved to Palm Springs, California, to try to rest and recover in the sunshine, but her symptoms only worsened. Eventually, she was admitted to the hospital and spent weeks receiving tests, blood transfusions, and pain medication. Finally, four years after experiencing her initial symptoms, a visiting physician from the Mayo Clinic referred her to an autoimmune specialist and she was diagnosed with Sjögren’s Disease.
Following years of advocacy work and serving as a voice for patients like herself, Janet assumed the role of President & CEO of the Sjögren’s Foundation in 2021. Under her leadership, the foundation works to raise awareness of Sjögren’s disease and support patients and their loved ones through education, resources, and services.Learn more
Patient Ambassadors Program
Patient Ambassadors provide input to the FNIH patient engagement plan, co-create a broader patient engagement platform and serve as patient spokespersons for the FNIH.
AMP Heart Failure
Cynthia is a stage 3 heart failure patient with preserved ejection fraction that was diagnosed 8 years ago. She also suffers from other comorbidities with stage 3 kidney failure due to kidney cancer and a nephrectomy.
Cynthia currently serves on the Heart Failure Society of America Board of Directors as a patient advocate where she has graciously shared her experience on the challenges of living with heart failure.
Cynthia is a retired clinical social worker where she worked in private practice, hospice and departments of health. Today she continues to volunteer as a cancer research advocate and is currently providing the patient perspective to our AMP Heart Failure program.
Cynthia’s hope for FNIH:
To fulfill the inclusion and activation of the patient voice and perspective in biomedical science
AMP Autoimmune and Immune-Mediated Diseases
Janet is currently the President and CEO of the Sjögren’s Foundation.
Sjögren’s is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.
Janet spent much of her career as a strategic tech and business professional but has always taken part in non-profit organizations, including serving as Board Chair for the Sjögren’s Foundation. As a Sjögren’s patient herself, she has a deep understanding of living with this disease. She is dedicated to educating and supporting patients and healthcare providers, funding innovative research, and acting as the voice of patients in advocacy initiatives.
Janet’s hope for the FNIH:
To bring public and private organizations together with patients and drive new discoveries about diseases that will positively impact patients lives.
AMP Bespoke Gene Therapy Consortium
Sharon is a passionate advocate and rare disease thought leader with expertise in bringing together various stakeholders to advance rare disease research and policy. Sharon’s daughter suffered from a rare disease, so she understands first-hand the unique challenges these individuals and their caregivers face.
Sharon serves as the Manager of Advocacy and Community Engagement at Aldevron, a manufacturer of biologics headquartered in Fargo, ND. There, she works to educate, connect, and improve understanding across the stakeholder community in the biotech space.
Sharon is providing her expertise to the AMP Bespoke Gene Therapy program.
Sharon’s hope for FNIH:
Complex challenges often require an all-hands approach. I hope the FNIH will continue to bring together dedicated partners with the necessary expertise and perspective to create the potentially life-altering therapies that patients so desperately need.
Carlos is an advanced practice nurse enrolled in a JD/Masters in Public Administration program at the University of Michigan Law School and Harvard Kennedy School.
As a young adult in recovery from schizophrenia, Carlos credits his family, community, and treatment team for facilitating an early intervention with life-saving medicines. Nevertheless, Carlos recognizes the need for novel treatments that are safer and more effective, allowing patients to lead their lives to the fullest. As such, Carlos has dedicated himself to supporting research efforts and is currently the co-chair of the AMP Schizophrenia program.
Carlos’s hope for FNIH:
Carlos aspires to co-create solutions that bridge the gap between cutting-edge scientific research and real-world mental health challenges. He believes we can redefine mental health care by drawing upon the collective effort and expertise of researchers, policy-makers, and lived experience advocates, to catalyze medical discoveries that improve the health and lives of people.
Parent and Advocate Bespoke Gene Therapy
Terry is the founder of CureSPG50 a nonprofit organization developing a cure for a ultrarare neurogenerative disease. SPG50 is a progressive brain disorder that begins in early childhood, it is caused by a missing protein. When children do not have this protein degeneration rapidly progresses and children lose the ability to use feet, hands and slowly their brain will depress until there is nothing left a sort of degenerative cerebal palsy.
When Terry’s son Michael was diagnosed with this ultrarare disease he quickly took on the mission of researching the disease, finding the scientific leaders and influencing regulators in both the US and Canada to pursue a gene therapy treatment. Along with leading the research effort Terry generously helps many parents all over the world who have children that are experiencing the same ultrarare disease as Terry’s son.
Terry’s hope for FNIH:
We are dealing with one of the most complex problem in the history of man-kind, Genetic conditions are a humanity level problem! My hope is with the worlds greatest minds collaborating together we can create a framework to allow others to follow that offers a clear path forward in a timeline that not only saves the next generation of children but this generation as well.
Eleni is the CEO of the Pre-eclampsia Foundation. The Foundation is a not-for-profit patient advocacy organization based in the US with a Canadian affiliate whose mission is to reduce maternal and infant illness and death due to preeclampsia, HELLP syndrome (hemolysis, elevated liver enzymes, low platelet count), and other hypertensive disorders of pregnancy by providing patient support and education, raising public awareness, catalyzing research and advocating for the improvement of healthcare practices.
As a preeclampsia survivor herself, Eleni is a champion for the improvement of patient and provider education and practices, for the important role that patients have in advancing the science and status of maternal-infant health, and for the progress that can be realized by building global partnerships to improve patient outcomes.
Eleni has served as a technical advisor to the WHO on the Hypertension in Pregnancy Task Force, as well as serving on numerous national and state committees to develop and deploy guidelines to ensure maternal safety.
Eleni has expertise in technology and biotech public relations.
Eleni’s hope for FNIH:
In addition to the benefits realized by public-private partnerships, Eleni’s hope for FNIH is that all projects employ authentic lived experience integration.
Patient Engagement Council
The FNIH Patient Engagement Council provides critical insights, guidance and advice on how the FNIH can achieve full integration of the patient, patient organizations and caregivers into the FNIH clinical research and non-clinical research. The advisory board is comprised of patient experts with a mix of leadership from patient centered organizations, along with patient thought leaders with appropriate representativeness in diversity of race, gender, and expertise.
- Jean Campbell Principal at JF Campbell Consultants, LLC, Professional Patient Advocate in Life Sciences (PPALS)
- Kristin Carman Director, Public and Patient Engagement, Patient-Centered Outcomes Research Institute (PCORI)
- Ricki Fairley CEO, Touch, The Black Breast Cancer Alliance
- Lisa Fitzpatrick MD, MPH, MPA Physician Founder, Grapevine Health
- Loriana Hernández-Aldama Founder, Armor Up for Life, Emmy-Award Winning Journalist and Speaker
- Theresa Mullin, PhD Associate Director for Strategic Initiatives, Center For Drug Evaluation And Research (CDER), U.S. Food & Drug Administration (FDA)
- Joan Nagel, MD, MPH Medical Officer and Program Director, National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS)
- Michele Oshman Vice President, External Affairs , Biotechnology Innovation Organization (BIO), Executive Director, Council of State Bioscience Associations (CSBA)
- Jason Resendez CEO, National Alliance for Caregiving (NAC)
- Randy Rutta CEO, National Health Council (NHC)
- Kristin Schneeman Senior Director, Faster Cures
- Alicia Staley Vice President of Patient Engagement, Medidata Solutions