When Phil Green was diagnosed with ALS in August of 2018, he immediately dedicated himself to making a difference in the fight against this horrific disease. As a former University of Washington football player on the 1991 national championship team, he knows the value of perseverance. He committed the next 25 years to building a successful career leading companies and teams to develop innovative technology solutions that helped brands such as Sony, Hewlett Packard, and Home Depot.
Today, Mr. Green applies this same dedication, knowledge, and work ethic to help multiple ALS organizations increase awareness of the condition, promote legislation, and raise funds. This devotion extends to a wide array of organizations that span the advocacy, biotech, and research sectors. These include Augie’s Quest, Team Gleason, I AM ALS, the International Alliance of ALS/MND Associations and others where he serves in a variety of leadership and advisory roles.
Mr. Green retired as the VP of Digital Innovation at Beeline Group and lives in California with his wife, Jennifer, and their four children.
Nuru Noor’s decision to go into medicine was shaped at an early age by witnessing the impact that medical conditions like diabetes and cancer had on his close family members. These profound, personal experiences left him with a deep appreciation for the challenges faced by both patients and caregivers. It also fueled a commitment for working with people to help them improve their quality of life and minimize the impact of medical conditions on their day-to-day activities. Now, as a fellow at the Cambridge University Hospital NHS Trust in Cambridge, U.K., Mr. Noor combines his insight as a caregiver with his education and proficiency in medicine. He has also worked at a number of volunteer organizations, including a stroke rehabilitation group where he helped people set their targets and meet physical activity goals.
Mr. Noor believes clinical trials should be inclusive and a part of standard clinical care for all patients. His view is that research questions and interventions should address areas of unmet need and that trials should aim to answer questions most important to patients and caregivers. Mr. Noor’s goal is to make a significant contribution that supports his passion for more efficient clinical trial designs. This, in turn, will help to ensure patients receive better treatments at a much faster rate.
Jamil Rivers was diagnosed at age 39 with metastatic breast cancer. As someone who holds a Bachelor of Science degree from Rutgers University, two master’s degrees from the University of Southampton and Acadia University, as well as many specialized certifications, Ms. Rivers understands the power of knowledge. In preparation for her battle to survive, she conducted extensive, meticulous research. This led her to a combination of treatments including chemotherapy, improved nutrition, and integrative therapies which have helped her improve and lead an active life that includes hormone therapy.
In 2019, Ms. Rivers used her background in finance, education, and non-profit leadership to launch The Chrysalis Initiative which helps to address treatment disparities and inequities and improve breast cancer outcomes by providing education and navigational support for patients and providers. She also harnesses her knowledge and expertise to benefit several advocacy organizations where she serves on the board and holds other positions.
Ms. Rivers is currently the CFO at Educationworks, Inc. She and her husband, Rick, have three children and reside in Pennsylvania.
Selection Criteria for Patient/Caregiver Representatives
Patient or caregiver with:
Willingness to commit time and effort to CTTI’s mission and projects
Ability to work proactively and be a self-starter
Understanding of clinical trials system and regulations
Previous experience with efforts to improve clinical trials
Experience working in a constructive manner with diverse stakeholders
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 ecosystem
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
Attend and actively participate in CTTI Steering Committee meetings, webinars, and conference calls (travel stipend may be provided for in-person meetings)
2 annual meetings in DC area (Sept/Oct and Mar/Apr)
Participate in CTTI projects
Serve as an active member and/or co-leader for at least one project team
Provide patient/caregiver voice for other CTTI project activities as appropriate
Seek opportunities to promote and engage others in CTTI’s work and in implementing CTTI’s recommendations
3-year term with opportunity to be extended 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.