About Us

About Us

Incorporated as a charitable foundation in Delaware and granted IRS 501c3 tax-exempt status in September 2022. Led by accomplished researchers, clinicians, and experience experts who work at the cross sections of academia, government, industry, and non-profit settings. Eager to partner with like-minded organizations that value and enable patients to participate in research aimed at improving their health and care. The Foundation reaches out to patients who are interested in participating in research by contributing information about what they feel and experience. 

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2023 Making Patients Heard.
All Rights Reserved.

Daniel Kinel JD, Secretary

Dan Kinel is a lawyer by training and profession. Since being diagnosed with Parkinson’s Disease in 2013, he has also become deeply involved both in patient advocacy and Parkinson’s Disease research.  Over the course of his almost three decades as a corporate and securities lawyer, he represented numerous companies, from start-ups to NYSE-listed public companies, in corporate governance, corporate finance, securities compliance and other business law matters.

 

Karl Kieburtz MD, Co-chair

Karl Kieburtz MD MPH is a neurologist and clinical researcher, and is currently Professor of Neurology, at the University of Rochester. He serves on the Steering Committee for the PPMI program sponsored by the Michael J Fox Foundation, and a Project Co-Director in the NINDS- funded Udall Center for Parkinson Disease at Rochester. He was elected as a Fellow in the American Association for the Advancement of Sciences in 2014. He co-founded Clintrex in 2008, providing scientific and regulatory advisory services to companies developing CNS therapies, and continues to serve as President. He serves on the scientific advisory boards of biotech and pharma companies, as well as for emerging data technology companies.

Ira Shoulson MD

Ira Shoulson, MD, trained in neurology, internal medicine, and experimental therapeutics, is currently professor of neurology at the University of Rochester and Georgetown University (adjunct), and chief medical officer at Modality.ai. 

In 2017, he founded Grey Matter Technologies, a company focused on interpreting what patients feel and experience in their own words using natural language processing and supervised machine learning. In June 2022, Grey Matter Technologies was acquired as a wholly owned subsidiary of Modality.ai where he now serves as chief medical officer.

Dr Shoulson’s passion for Making Patients Heard originated from his medical training at the University of Rochester and the National Institutes of Health (NIH), that in turn inspired his founding of the Parkinson Study Group (www.parkinson-strudy-group.org) and Huntington Study Group (www.huntington-study-group.org)  ̶̶  international academic consortia devoted to research and development of treatments for Parkinson and  Huntington diseases.  He has led more than 50 clinical research studies and played an instrumental role in the development of 10 new drugs for neurological disorders, including for Parkinson disease (selegiline, lazabemide, pramipexole, entacapone, clozapine, rasagiline, rotigitine), Huntington disease (tetrabenazine, dutetetrabenazine), and attention deficit disorder (Concerta). 

Dr. Shoulson is an elected member of the National Academy of Medicine of the National Academy of Sciences and was the recipient of the Michael J. Fox Foundation Pritzker Prize in recognition of his leadership in research and education for Parkinson disease. In September 2022, Dr Shoulson founded and now chairs the Making Patients Heard Research Foundation (MPH), a non-profit charitable organization with a mission to empower patients to be better narrators of their health, improve tools for online research and care, and develop clinicallymeaningful treatments.

Cindy Casaceli

Ms. Casaceli is a Research Associate Professor at the University of Rochester Center for Health + Technology. Ms. Casaceli holds an MBA from the Simon School of Business with concentrations in Computer Science and Accounting. Cindy’s undergraduate work was in Biochemistry with a concentration in Computer Science.

Over the past 25 years Ms. Casaceli has participated in the conduct of Neurologic research in Parkinsons Disease, Hunington’s Disease, Freidrich’s Ataxia and Alzheimers Disease. Ms. Casaceli has held positions including the Clinical Trials Coordination Center (CTCC) Director, CTCC Director of Data Management and the Interim Director of the Center for Health + Technology. She is a subject matter expert in the operational conduct of multicenter clinical trials and has 3 drug approvals.