Patient
Voices

Cynthia Chauhan

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

Janet Church

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.

Sharon King

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 Larrauri

AMP Schizophrenia

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.

Terry Pirovolakis

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 Tsigas

Preeclampsia Project

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.