EmpowerMyCH Advisory
Board Member
As a woman of color, I wanted my demographics to be heard and accounted for. When I was diagnosed, back in the late 60's early 70's, with Tetralogy of Fallot, things were a lot different and actually became scary. Since being involved with this wonderful group of trailblazers, I have learned a lot more about my condition that I wish I had known back in the day. I am here to help others learn now, what I wish I had the opportunity of knowing. Growth and education in any medical field are very important and I am just glad that I can be a part of it in any way.
Alison Gill
Tetralogy of Fallot Patient • Michigan
Study Team
Anushree (Anu) Agarwal, MD, MAS
Principal Investigator
UCSF
Gregory Marcus, MD, MAS
Co-Investigator
UCSF
Michelle Gurvitz, MD
Co-Investigator
Boston Children's Hospital
Harvard Medical School
Megumi Okumura, MD, MAS
Co-Investigator
UCSF
Karina Manayan, NP
Co-Investigator
UCSF
Aleah Sparks, RN, MSN, CPNP-PC
Patient Co-Investigator
Joe Valente, BCPA, BS
Patient Co-Investigator
Team Uncle Joe
Karina Buenrostro, BA
Clinical Research Coordinator
UCSF
Rong Duan, MS
Statistical Analyst
Parang Kim, MA
Protocol Project Manager
UCSF
Lindsay Alano, MA
Patient Engagement Specialist
Team Uncle Joe
Student Researchers
Katelyn Macholl, BS
Student Researcher
Juhi Meta, BS
Student Researcher
Kevin Sun, BS
Student Researcher
Pranav Ahuja, BS
Student Researcher
Alice Qian, BS
Student Researcher
Heart Research Alliance
Madelaine Faulkner Modrow, MPH
Director of Heart Research Alliance
Consultant
Professor Philip Moons
Consultant
University of Leuven, Belgium
Advisors
Jennifer Gilmartin, NP
ACHD Nurse Practitioner
Alison Gill
Patient
Carissa Ostrom
Family Member
Conquering CHD
Mandy Sandkuhler
The Mended Hearts, Inc.
Kimberly Payton, PhD
Family Member
Savannah Regan-Hendrix, MSCP
Patient
Karla Deal
Patient
Adult Congenital Heart Association
Drezden Plotkin
Patient
Adult Congenital Heart Association
Dorothy Li
Patient
Jodi Smith
Family Member
Patient & Family Advocacy Leader
Leigh Reardon, MD
Pediatric and ACHD Cardiologist
University of California Los Angeles
Katia Bravo-Jaimes, MD
ACHD Cardiologist
Mayo Clinic, Jacksonville, FL
Mark D Norris, MD, MS
Pediatric and ACHD Cardiologist
University of Michigan
Benjamin H Meisel, MD
Medical Director
California Children's Services San Francisco
Participating Organizations
Adult Congenital Heart Association
Conquering CHD
Mended Little Hearts
Team Uncle Joe
Acknowledgments
Special thanks to these individuals for their valuable contributions to the EmpowerMyCH project.
Samantha Tolosa
ACHD Patient
For providing valuable patient perspective and insights that helped shape our approach.
Margaret (Peggy) Powers
ACHD Program Coordinator
UCSF
For her dedication to improving care coordination and patient experience.
In Memoriam
Carol Maguire, RN
A Founder of Eureka
We remember Carol, who was a selfless and passionate champion for engaging patients and the community in congenital heart research.
