Representatives

Frank Blanceró is a Community Representative for the NIH RECOVER Initiative. His work centers on the crisis of Long COVID, infection prevention and control, implementation science, public health messaging, community engagement, and resources distribution.

Frank’s work at the intersection of public health and emergency management began at the outset of the COVID-19 pandemic while he was working in disaster preparedness and emergency response in New York City. During this time, he helped assemble and lead multi-sector coalitions that coordinated the dissemination of critical public health information and the distribution of essential resources during overlapping public health emergencies.

Frank currently leads campaigns and initiatives designed to address gaps in public health infrastructure, strengthen community-driven awareness and responses, and translate scientific evidence into actionable guidance. His work prioritizes centering evidence-based research, patient, caregiver, and community member lived experience, improving public awareness about COVID and Long COVID, and supporting effective public health implementation and systems improvement.

Etienne A. Carignan is a COVID-19 survivor and has served as a Patient Representative with the RECOVER Initiative since 2023. His professional background includes military service, 13 years as communication technician, and 10 years as Sales Manager for multiple major car manufacturers. His education includes a culinary degree as well as degrees and certifications in electrical sciences, network security, and project management. His past and current leadership roles have allowed him to develop an eye for detail, the ability to identify a problem, and the skills needed to work out viable solutions. In addition to serving as an NCEG Co-Chair, Etienne has also co-authored several RECOVER publications.

Leah Castro has been a Community and Caregiver Representative with RECOVER since May 2022. Her professional background includes 20 years’ experience as a music and entertainment journalist/producer, 3 years’ experience as a realtor, and nearly 5 years’ experience contracting in the Community Engagement space. Working in these different roles has allowed her to develop a keen eye for detail, exceptional problem-solving abilities, and a commitment to excellence that seamlessly translates into multiple sectors.

Leah currently participates in several leadership groups within the RECOVER Initiative. In addition to serving as NCEG Co-Chair, she is Co-Lead of the NCEG Publications Subcommittee. In August 2022, she co-developed the standard operating procedure (SOP) the Publications Subcommittee follows to include Representatives in the authorship process for RECOVER publications. Leah also serves one of the Representatives on the Observational Consortium Steering Committee (OCSC).

Marta Cerda is a Co-Chair of the NCEG and served on the RECOVER Clinical Trials Steering Committee and the RECOVER-VITAL Platform Protocol Writing Team. Marta has more than 38 years’ experience in corporate, not-for-profit, philanthropic, and political arenas. She is currently CEO of ASI, a not-for-profit organization that provides home health, telehealth, home care services, employment, and training programs.

Marta is a dynamic leader who takes a transformative approach to leadership, using her experience and global vision to analyze trends and forecast where the healthcare industry is headed. She has transformed ASI from a fee-for-service model to a population health model.

During the COVID-19 pandemic, Marta led ASI’s vaccine outreach initiatives. Her efforts led to ASI receiving a grant from the Health Resources & Services Administration (HRSA) to conduct COVID-19 vaccination and outreach in 5 Latino and African American communities in Chicago where people face difficulties accessing healthcare services. ASI also created a team of 13 Community Health Workers who reached most of Chicago with resources and vaccinations. In September 2024, she co-organized a Long COVID Summit in partnership with ILLInet RECOVER, UI (University of Illinois) Health, and several other community-based organizations.

Marta earned her Bachelor of Arts degree from Smith College and a Juris Doctor degree from Loyola University’s Chicago School of Law. She is a candidate for the Northwestern-Kellogg School Executive Scholar Program. As a National Hispana Leadership Institute Fellow, she has attended the Center for Creative Leadership and the John F. Kennedy School of Government at Harvard University. Marta completed How Women Lead’s global fellowship, Women Leaders for the World 2024. She was named a Notable Woman in Healthcare in Crain’s Chicago.

RECOVER Community Representative Jacqui Lindsay is Founder and President of Innovation by Design, a consulting firm that that specializes in strategy, innovation, and leadership development for organizations committed to social and systems change. She also leads the Boston COVID Recovery Cohort (BCRC), a coalition of 6 Massachusetts hospitals supported by RECOVER to conduct research on COVID-19 and the communities most impacted by the disease and its long-term effects. Jacqui is committed to the development of a world that’s enriched by what diverse groups of people produce when they are supported to think and learn together, discover common ground, and work together to create the future they want.

• Consulted on RECOVER clinical trials: Representatives reviewed and provided feedback on protocols, materials, and recruitment documents for studies testing the safety and effectiveness of treatments for Long COVID symptoms. Representatives also shared recommendations on how to support trial participants and keep them engaged.
• Participated in RECOVER-TLC kickoff meeting: Representatives shared their knowledge, perspectives, and experiences at this 3-day event to plan the next phase of RECOVER clinical trials: RECOVER–Treating Long COVID (RECOVER-TLC).
• Reviewed pathobiology study proposals: Representatives evaluated applications for funding submitted for RECOVER PASC Pathobiology Substudies (Research Opportunity Announcement [ROA] OTA-21-015J).
• Launched Discover RECOVER video series: Representatives created the concept for and appeared on camera in these short videos summarizing important RECOVER research findings.
• Co-authored 17 RECOVER publications: Representatives also collaborated with researchers on an additional 45 manuscripts, or publications in progress.
• Presented at scientific conferences: Representatives shared RECOVER research findings by participating in presentations at events including the University of California at Los Angeles (UCLA) Long COVID in Pediatrics conference, Pediatric Academic Societies (PAS) meetings, and the annual meeting of the American Public Health Association (APHA).
• Held listening sessions: Representatives developed and initiated a plan for Community Engagement Listening Sessions.
• Increased number of Representatives: The NCEG onboarded 38 new RECOVER Representatives. Representatives also elected and onboarded new NCEG members and Co-Chairs.
• Created the Representative directory: The NCEG expanded the Representative network by creating a directory, making it easier for Representatives to connect with one another.
• Enhanced Peer Exchange participation: The NCEG Engagement Subcommittee transitioned Peer Exchange to a paid activity, resulting in a growth of participants from approximately 10 to 30.

• Extended recruitment enrollment period: Representatives from Hispanic and rural communities helped RECOVER researchers recruit more study participants from their communities.
• Revised legal next-of-kin surveys: Representatives provided caregiver and disability perspectives to improve the form for the families of people enrolled in RECOVER autopsy studies.
• Co-authored RECOVER research publications: Representatives partnered with RECOVER researchers to share study findings reflective of their communities.
• Made RECOVER research more accessible: The NCEG Communications Subcommittee reviewed RECOVER plain language research summaries and other dissemination materials.
• Presented at RECOVER Research Review (R3) Seminars: Multiple Representatives spoke as panelists at R3 seminars.
• Developed authorship training: The NCEG Publications Subcommittee developed authorship training for Representatives and researchers.
• Created Representative newsletter: The NCEG Representative Engagement Subcommittee collaborated with RECOVER leaders to make communications with Representatives more transparent.
• Met with National Institutes of Health (NIH) leaders: NCEG Co-Chairs worked with NIH to guide community engagement restructuring.
• Formed NCEG Subcommittees: Representatives joined NCEG Publications, Representative Engagement, and Communications Subcommittees.
• Advocated for additional seats: NCEG Co-Chairs successfully petitioned for additional Representative seats on the RECOVER Cores Operations Group (COG) and Steering Committee.

• Extended inclusion criteria: Representatives supported changing inclusion criteria to extend the period from a prior positive COVID test to 36 months.
• Developed community-specific study materials: Representatives joined focus groups to create recruitment materials tailored to American Indian/Alaska Native, Black, and Hispanic communities.
• Created participant feedback questionnaire: Representatives helped create a questionnaire to collect feedback from participants about their experiences with the RECOVER studies.
• Provided feedback on adult study: Representatives provided feedback on the adult protocol symptom questionnaire and Manual of Operations and Procedures (MOP).
• Modified adult comorbidities case report form: The RECOVER COG approved Representative recommendations to modify this form.
• Reviewed clinical trials ROAs: Representatives reviewed and provided feedback on how RECOVER engages researchers interested in studying potential treatments for Long COVID. Representatives also joined the protocol working groups and provided input on the design of RECOVER clinical trials.
• Participated in Integrative Physiology Task Force: Representatives provided input on tests to measure how Long COVID affects a range of body functions.
• Drafted Representative authorship guidelines: Co-developed a process for Representatives working on RECOVER manuscripts.
• Created Learning Hubs: Created Learning Hub forums to meet Representatives’ needs and engage with study sites.
• Produced Representative journey video: Representatives helped create a video showing how they impact RECOVER.
• Updated payment process: Representatives voted on different payment options and chose how often to be paid.
• Evaluated community engagement structure: Representatives revised roles, responsibilities, and engagement trainings.
• Held first NCEG meeting: More than 15 Representatives attended.
• Joined Steering and Executive Committees: Representatives gained seats on the Steering and Executive committees.
• Presented on Representative engagement: The Community Engagement team presented strategies and accomplishments to the U.S. Department of Health and Human Services (DHHS).
• Collaborated with White House Long COVID Council: The Council presented at the NCEG meeting at the Representatives’ request.

• Informed study plans: Representatives attended meetings to help create study plans.
• Set rule that positive COVID tests are not needed to participate in studies: Participants who had COVID no longer need to present a positive COVID test result to join observational studies.
• Included participants who had COVID at any time in the past: Representatives updated inclusion criteria so people who had COVID at the start of the pandemic (including more than 12 months ago) can join studies.
• Reviewed recruitment materials: Representatives reviewed and gave input on materials to recruit study participants.
• Developed symptom survey: Representatives completed the first draft of a participant symptom survey taken from the Body Politic (patient group) survey. Representatives later revised this draft and reorganized the survey to ask about Long COVID physical symptoms first, then mental health symptoms.
• Contributed to participant survey: Representatives added the question “Do you think you have Long COVID?” and questions specific to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
• Revised Standard Operating Plan (SOP) and Case Report Form (CRF): Representatives changed the SOP to return clinical results to participants. Representatives changed the CRF to give people with ME/CFS accommodations to complete it.
• Finalized committee assignments: Representatives received their preferred committee assignments.