Become a Patient/Caregiver Representative

Patient and caregiver representatives play a vital role in advancing CTTI’s mission by sharing their lived experiences, contributing to project teams, and engaging with experts to improve clinical trials. Representatives commit to a three-year term, leading projects and participating in meetings, and helping to implement CTTI’s recommendations within the broader patient advocacy and clinical trials community. 

Selection Criteria for Patient/Caregiver Representatives

Patient or caregiver with:

Willingness to commit time and effort to CTTI’s mission and projects 
Understanding of, and interest in, clinical trials system and regulations 
Previous experience with efforts to improve clinical trials 
Well-positioned within the advocacy community to gather input for CTTI initiatives and communicate CTTI's work to the patient/caregiver community and others within the clinical trials enterprise 
Ability to represent a broad range of patient perspectives and experiences 
Public speaking skills and experience desirable

Expectations for Patient/Caregiver Representatives

Support CTTI's mission within patient advocacy communities

Represent the individual patient/caregiver experience

Actively participate in CTTI's bi-annual Steering Committee meetings and bi-monthly webinars (in person or virtually, based on ability and/or preference)

Contribute ideas for CTTI projects and participate in their conduct and analysis:
- Serve as an active member and/or co-leader for at least one project team per year

- Provide patient/caregiver voice for other CTTI project activities as appropriate (e.g. expert meetings, advisory committees, etc.)

Seek opportunities to promote and engage others in CTTI’s work and in implementing CTTI’s recommendations

Terms

Three-year term with the opportunity to be extended for one year or up to one additional term based on participation and performance

CTTI values collaboration, constructive dialogue, mutual respect, and solution-oriented thinking. Thus, CTTI reserves the right to bring a term to close early should a representative not be a good fit with the organizational values or fail to meet the expectations listed above.

Current Representatives

Emeritus Representatives

Profiles of CTTI's Patient/Caregiver Representatives

Phil Green

No White Flags: In the Face of ALS, Phil Green Won't Blink First

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"I bring ALS to CTTI, but I also bring a huge amount of knowledge from CTTI back to the ALS community," he said. "CTTI really gives me the opportunity to have the biggest impact on my disease."

Ella Balasa

Meet Ella Balasa, a patient and scientist deeply committed to amplifying the patient voice in healthcare

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Ella is based in Tampa Bay, Florida and finds joy in beach and boating days, seeing cotton candy sunsets, and traveling as often as she can.

Megan O'Neil

Meet Megan O’Neil, a passionate patient advocate focused on advancing cancer research and promoting equitable patient care

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Based in Venice, CA, with her husband and beloved pup Panda, Megan finds joy in beach walks, hand-building ceramics, and the simple pleasures of quiet mornings with a cup of coffee.

Nuru Noor

Former Caregiver Representative

Beyond the Ivory Tower: Nuru Noor Breaks Through Bureaucracy to Bring Research to Patients

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"In my role with CTTI, I've been amazed by the hard work and enthusiasm of everyone involved," said Nuru. "All members are seeking better solutions to some of the most critical challenges facing clinical research. By 2030, I do believe that many organizations will embrace this vision for more inclusive, less bureaucratic and especially more patient-centered clinical trials."

Jamil Rivers

Former Caregiver Representative

Transformation, Hope, and the Inspiring Leadership of Jamil Rivers, The Chrysalis Initiative Founder & CTTI Steering Committee Rep

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"I see a future where clinical trials are underpinned by equity best practices, and trials are easier to access for diverse communities through more transparent, balanced, representative eligibility criteria," she said. "With the combined power of The Chrysalis Initiative, CTTI and other visionary organizations, I believe we will get there."