Patient Leadership

Council

The Patient Leadership Council (PLC) brings together leaders from advocacy groups and voluntary health agencies to participate in finding innovative solutions to challenges such as patient recruitment and retention. Below, you can view two videos highlighting the work of the PLC:

 

*The views and opinions expressed in this video are those of the speaker and do not necessarily reflect the official policy or position of CTTI.

 


A complete list of CTTI's PLC members are presented blow: 

 

PLC Members

Jeff Allen, PhD

Jeff AllenJeff Allen, PhD serves as the Executive Director of Friends of Cancer Research (Friends), a cancer research think tank and advocacy organization based in Washington, DC. Working with the entire cancer research and advocacy community, Friends pioneers innovative public-private partnerships, organizes critical policy forums, educates the public, and brings together key stakeholders to overcome the barriers standing between patients and the most promising cancer treatments. Dr. Allen is a thought leader on US Food and Drug Administration-related regulatory and scientific policy, as well as comparative effectiveness research. During his time with Friends, Dr. Allen has served as the organizing author of multiple reports on these topics.

Dr. Allen is a Board Member of the Alliance for a Stronger FDA; a Technical Expert Panel Member for the Center for Medicare and Medicaid Services, Chemotherapy Infusion Quality Measures Group; a Strategic Team Member for the U.S. Food and Drug Administration Entrepreneurs in Residence Program; a member of the Director’s Consumer Liaison Group for the National Cancer Institute; a Governance Board Member of the Multi-Payer Claims Database initiative of Health and Human Services; and Co-Chair of the advocacy coalition Regulatory Education and Action for Patients.

Prior to joining Friends, Dr. Allen was an endocrinology fellow in the Laboratory of Clinical Investigation of the National Center for Complementary and Alternative Medicine at the National Institutes of Health. Dr. Allen received his PhD in cell and molecular biology from Georgetown University, and holds a Bachelors of Science in Biology (cum laude) from Bowling Green State University.


Annette Bar-Cohen, MA, MPH

Annette Bar-CohenAnnette Bar-Cohen has worked in public health and specifically in women’s health for nearly 30 years. She joined the National Breast Cancer Coalition (NBCC) in 2002 and is currently Executive Director of the Center for NBCC Advocacy Training which includes all of NBCC’s training programs and annual conferences in public policy, science and research, quality care and continuing education and the Online Center for Advocacy Training. NBCC’s premier science and quality care training program, Project LEAD®, includes introductory to advanced courses, nationally and internationally including an advanced course on clinical trials. Prior to her work at NBCC, Ms. Bar-Cohen was the Education Director of the Cancer Control Section of the Minnesota Department of Health. There she helped develop and manage the CDC sponsored Minnesota Breast and Cervical Cancer Control Program, a statewide program for underserved women. Ms. Bar-Cohen worked for 12 years on a WHO sponsored primary care and community health program in Israel on women’s health issues, coalition building, outreach to diverse ethnic communities, and media. She worked as a psychotherapist at the Beer Sheva Psychiatric Hospital and at the Ben Gurion University of the Negev Medical School.


Diane Edquist Dorman

Diane Edquist DormanMs. Dorman is the Vice President for Public Policy for the National Organization for Rare Disorders (NORD) and leads NORD efforts in its relationship with the federal government and Congress. She is the primary DC representative for more than 30 million Americans who have one of the 7,000 known rare diseases. Her overriding mission is to improve the plight of patients with rare diseases and increase incentives for the development of orphan drugs, devices, and diagnostics. Since joining NORD in October 2000, Ms. Dorman’s advocacy has been instrumental in the passage of three public laws and has been influential in the adoption of numerous programs, regulations and guidances that touch the lives of patients with rare diseases. On behalf of NORD and coalitions in which NORD participates, Ms. Dorman leads education and outreach programs to gain policymaker support for increased research into rare diseases and greater development of orphan products. She sits on the Board of Directors and Executive Committee of the Alliance for a Strong FDA, and currently serves as President of that organization.


Cynthia Geoghegan

Cindy GeogheganCindy Geoghegan has been on a mission since she was diagnosed with breast cancer -- to ensure that every patient, every group of patients and every person who cares about them is as important, is as informed and has as much of a voice as the doctors, researchers, legislators and insurers who direct their care. Geoghegan founded Patient & Partners LLC in 2009 to provide patient-centered health communications and strategic policy counsel to academic institutions, non-profit organizations and health care companies driven toward a common goal -- results that improve people’s lives.

Geoghegan was most recently CEO of Y-ME National Breast Cancer Organization, where she returned the organization to its unique mission of peer-to-peer support, and drastically reduced expenses to enhance Y-ME’s 24/7 hotline and network of 150 breast cancer survivors.

Geoghegan was previously executive advisor of scientific community relations for Susan G. Komen for the Cure®, where she worked closely with Komen’s chief scientific advisor and scientific advisory board on grants strategy, scientific programs, education materials and public policy initiatives. As a founder of the Komen’s Maryland Affiliate, she created a community grants program, lead education efforts and worked on statewide legislative policy efforts. When she relocated she was elected president of Komen’s Greater New York City Affiliate, and received Komen’s “Affiliate of the Year” distinction and became the largest revenue producer in the 120-plus-affiliate network.


Cynthia George, RN, FNP, MSN

Cynthia GeorgeAs the Director of Clinical Research Resources at the Cystic Fibrosis Foundation, Cynthia leads national efforts to promote awareness about cystic fibrosis (CF) clinical research, engage people with CF and their families in CF clinical trials, foster collaboration between research and clinical care teams, and improve the management of CF clinical trials. Knowing that patients and their families play a critical role in clinical research, she works to build a culture of research at CF research in which care center staff, research staff, and people with CF and their families work together to make clinical research happen. In the building of this culture, a multitude of educational resources have been developed to educate patients and families about the clinical trial process, their role and how to partner with the research and clinical professionals. All of these resources help to inform their decision about participation in clinical trials. Cynthia also strives to improve the quality and efficiency of clinical research performance at CF research centers through the application of quality improvement in clinical research. In conjunction with colleagues, she developed an interactive website that provides tools and resources for researchers as they strengthen their programs.


Sharon Hesterlee, PhD

Sharon HesterleeDr. Hesterlee is the Vice President of Research for Parent Project Muscular Dystrophy, where she oversees a $4 million research portfolio and manages the Duchenne Drug Development Research Roundtable. Previously she spent 11 years with the Muscular Dystrophy Association where she established MDA Venture Partners (MVP), a wholly-controlled subsidiary exclusively focused on the discovery and commercialization of therapies for neuromuscular disease. Before heading MVP, Dr. Hesterlee was the Vice President for Translational Research at MDA, where she brokered and managed over $30M in drug development contracts with industry and other partners. She has also served as part-time Scientific Director for the Association for Frontotemporal Degeneration where she managed the FTD Treatment Study Group. She has been involved in the planning of numerous meetings to identify and remove barriers to therapy development for rare disease and she has served on several federal advisory boards. Dr. Hesterlee received her PhD in neuroscience from the University of Arizona in 1999. She currently serves on the Board of Directors of the Health Research Alliance, the Advisory Board to the University of Arizona's School of Mind Brain and Behavior and on the NINDS Council.


Cheryl L. Jernigan, CPA, FACHE

Cheryl JerniganA 17-year breast cancer “thriver” and breast health advocate, Cheryl is the lay member of the Susan G. Komen for the Cure® Scientific Advisory Board, and Chair of the Strategic Missions Committee for the Greater Kansas City Komen Affiliate. She is also Immediate Past Chair of The Advancement Board for The University of Kansas Medical Center and Hospital and Co-Chair of their Cancer Funding Partners; and a past Board President and founding board member of Turning Point, which provides psycho-social support services for patients and their families dealing with chronic or life-threatening diseases. She is a recent member of the National Cancer Institute’s Director’s Consumer Liaison Group (DCLG) and currently part of their Consumers in Research and Related Activities (CARRA) program. While on the DCLG, she served as their representative to the National Community Cancer Centers Program. She has served as an advocate reviewer for Susan G. Komen and the U.S. Congressionally-Directed Breast Cancer Research Program. Ms. Jernigan is also a founding member of Komen’s Advocates in Science Steering Committee, and was a founding Board Member, past Board President, and public policy co-chair for Komen’s Greater Kansas City Affiliate. She is a “co-survivor” with her husband who is living with metastatic prostate cancer and is a survivor of HPV tonsil cancer.


William B. Lawson, MD, PhD, DLFAPA

William B. LawsonDr. Lawson is currently Professor and Chairman of the Department of Psychiatry and Behavioral Sciences at Howard University Health Sciences, Washington, DC. He is also a professor on the graduate faculties of psychology and pharmacology. He is President of the DC chapter of Mental Health America, Past President of the Washington Psychiatric Society, a Distinguished Life Fellow of the American Psychiatric Association and a member of the American College of Psychiatrists. He is past Chair of the Section of Psychiatry and Behavioral Sciences of the National Medical Association, and past president of the Black Psychiatrists of America. He was inducted in Sigma XI the scientific honor society and Alpha Omega Alpha, the medical honor society. He received the Howard University Faculty Senate Creativity and Research Award, the National Alliance for the Mentally Ill Exemplary Psychiatrist Award and the National Alliance for the Mentally Ill, Outstanding Psychologist Award. He was twice named one of “America’s Leading Black Doctors” by Black Enterprise Magazine, Americas Top Doctor by US News and World Report five times. He was the Andrea Delgado Honoree and Lecturer for the Black Psychiatrists of America, received the Jeanne Spurlock Award from the American Psychiatric Association, received the E.Y. Williams Clinical Scholar of Distinction Award from the Psychiatry and Behavioral Sciences Section of the National Medical Association, a Multicultural Workplace Award from the Veterans Administration for his outstanding contributions to the advancement of diversity and multicultural understanding. He has over 170 publications and has received federal and foundation funding to study and treat severe mental illness, substance abuse, and AIDs. 


Olivia Lou

Scientific Program Manager, Juvenile Diabetes Research Foundation (JDRF)

Bio coming soon...


Claire Meunier

Claire MeunierBefore Claire was named Vice President of Research Engagement at the Michael J. Fox Foundation (MJFF) for Parkinson’s Research, Claire served as the Director of Research Partnerships, where she managed the clinical trial strategies team. In that capacity, Claire lead MJFF's thought leadership on clinical trial recruitment, including leading recruitment and retention planning for the PPMI study, advising foundation-funded trials on recruitment strategy and overseeing Fox Trial Finder. Prior to joining MJFF, Claire earned her MBA from the Kellogg School of Management. Before that, Claire was the Special Projects Manager in the Department of Geriatrics at Mount Sinai School of Medicine in New York City. In this capacity, she managed a national initiative in geriatric education, leading the collaborative activities of clinician-educators from 30 leading medical schools in the creation and dissemination of medical education materials. Ms. Meunier holds a BS from Vanderbilt University in Human and Organizational Development with a concentration in Leadership and Organizational Effectiveness. She currently serves as the Chair of the Board of Engineers for Blue Engine, an education non-profit that partners with public high schools serving low-income communities to increase academic rigor to prepare more students for post-secondary success.



Wendy K. D. Selig, MSC

WendySeligWendy K. D. Selig is President and CEO of the Melanoma Research Alliance (MRA), a public charity focused on finding and funding the most promising melanoma research worldwide that will accelerate progress toward a cure. Ms. Selig drives and manages MRA’s strategic priorities, research portfolio, and day-to-day operations. Under her leadership, the MRA is accelerating progress toward a cure for melanoma by supporting an international, cross-disciplinary group of biomedical researchers exploring, identifying, and pursuing innovative, transformative research.

Prior to joining the MRA, Ms. Selig spent nearly a decade in leadership positions at the American Cancer Society and its advocacy affiliate, the American Cancer Society Cancer Action Network (ACS CAN). She currently serves on the Board of Directors of the National Coalition of Cancer Research (NCCR). Previously, from 1989-2000, Ms. Selig served on Capitol Hill as a top aide for US Representative Porter J. Goss (R-FL), the House Rules Committee and the House Permanent Select Committee on Intelligence (HPSCI). A native of Princeton, New Jersey, Ms. Selig is a Magna Cum Laude graduate of Princeton University and holds a Masters in Science (With Distinction) from Northwestern University’s Medill School of Journalism.


Lisa M. Tate

LisaTateLisa M. Tate has enjoyed a career of more than 25 years in public affairs, healthcare advocacy, and non-profit management. As CEO of WomenHeart, the National Coalition for Women with Heart Disease since 2007, she has led the organization's re-branding, increased revenue by one-third, tripled the number of community-based patient support networks in operation, doubled membership and increased volunteer engagement and satisfaction -- the key to WomenHeart's success. Based in Washington, DC, WomenHeart is the only national patient-centered organization dedicated to promoting women’s heart health through education, patient support, and advocacy. Visit: www.womenheart.org.

Prior to joining WomenHeart, Lisa served as Vice President, Public Affairs for the National Association of Children's Hospitals and Related Institutions and managed public affairs programs for the American Academy of Pediatrics. Lisa serves on the board of the Public Affairs Council and recently received The First Ladies of Distinction Visionary Award from the YWCA of Metropolitan Washington, DC.


Veronica Todaro, MPH

Veronica TodaroVeronica Todaro is the Director of National Programs for the Parkinson’s disease Foundation (PDF). Ms. Todaro created and leads Parkinson’s Advocates in Research (PAIR), a national research advocacy initiative developed to advance the role of people with Parkinson’s in the clinical research process. She has led multi-stakeholder roundtables that focusing on barriers to clinical research participation, including topics on building patient trust in clinical research and engaging community physicians. Ms. Todaro spearheaded PDtrials, a coalition-led clinical research education and awareness campaign that featured www.pdtrials.org, the first online resource for people with Parkinson’s and care partners who wished to learn more about study participation and locate trials seeking volunteers. Her work also includes the creation of the PDF People with Parkinson’s Advisory Council, the first formal patient advisory body to a national Parkinson’s organization. Ronnie serves as an Institutional Review Board member for Huntington Hospital and is on the Editorial Board for the Global Forum, the journal of the Drug Information Association.


Patient Representative To CTTI Executive Committee

Nancy Roach

Nancy RoachNine years after her mother-in-law was diagnosed with colorectal cancer, Ms. Roach founded Fight Colorectal Cancer, recognizing the need for an advocacy organization to provide focus, infrastructure, and support for patients with colorectal cancer, survivors, and caregivers. Since then, Ms. Roach has played a vital role in championing the need for a cure for colon and rectal cancer through screening, awareness, and research. Her efforts as an advocate have supported patient resources and education as well as the research community. Fight Colorectal Cancer advocates state and federal policies that support increased colorectal cancer research opportunities across the country. The organization has directed hundreds of thousands of dollars in research funding to young investigators. Ms. Roach serves on the National Cancer Institute Board of Scientific Counselors and the Clinical Trial and Translational Research Advisory Committee. She has been involved with cooperative groups and SPORES, and currently serves on the NCI Colon Task force. A past chair of the NCI Patient Advocate Steering Committee, she received the NCI Director’s Service Award when her tenure was completed. She has also received the Preventing Colorectal Cancer Champion Award and the Colon Cancer Alliance Sapphire Visionary Award in recognition of her efforts on behalf of patients. She frequently speaks at national and international meetings as a patient advocate.


Patient Representatives To CTTI Steering Committee

Stephen Mikita, JD

Stephen MikitaAs one of the oldest survivors of Spinal Muscular Atrophy (SMA)—a genetic neuromuscular disease characterized by muscle atrophy and weakness--Mr. Mikita has been uniquely positioned to witness the collaborative efforts of drug companies, government agencies, academic and advocacy groups in developing new therapeutics for SMA. In general, SMA presents early in life and is the leading genetic cause of death in infants and toddlers. As a frequent speaker to SMA patient groups and their families, Mr. Mikita desires to focus his efforts in improving the clinical trial process to benefit the future generation of SMA patients as well as others with rare diseases. Mr. Mikita has been a Utah Assistant Attorney General for 30 years and represents Utah’s three largest agencies serving and protecting individuals with disabilities. He is an FDA Patient Representative. Mr. Mikita is also a Patient Representative for Columbia University Medical Center’s Neuro NEXT program and specifically is a consultant in SMA biomarker studies. He is a member of the Board of Directors for the Spinal Muscular Atrophy Foundation. Mr. Mikita was the first freshman in a wheelchair at Duke University, where he graduated magna cum laude.


Jane Perlmutter, PhD, MBA

Jane PerlmutterJane Perlmutter is a long-term breast cancer survivor and advocate. As a volunteer, she has run breast health awareness workshops, provided peer counseling to women diagnosed with breast cancer, served on numerous national committees and panels, trained other advocates and been involved in several cancer research projects. Being committed to improving patients’ experiences and accelerating progress in their treatment, Jane has been especially interested innovative clinical trial design and improving patients’ involvement in their treatment decisions. Her professional training and experience as an experimental cognitive psychologist who has worked in academia, corporate R&D and consulting, as well as her personal experience interacting with many patients inform her advocacy work. In regard to clinical trials, Jane has been an advocate member of the Clinical Trials Transformation Initiative (CTTI), Clinical Trials Summit’s Informed Consent Steering Committee, Alliance Cooperative Group (previously CALGB) Breast Cancer and Health Outcomes Committees, Translational Breast Cancer Research Consortium (TBCRC), NCI Breast Cancer Local Regional Task Force (BOLD) and five year faculty member at the AACR/ASCO Method in Clinical Research Workshop. She is also the lead advocate on the I-SPY 2 clinical trial, and a member of the planning committee and coach for ENACCT’s National Cancer Clinical Trials Breakthrough Collaborative (NCCTBC).


CTTI Liaison

Bray Patrick-Lake, MFS

Bray Patrick-LakeMs. Patrick-Lake supports efforts to actively engage patient advocacy organizations and other stakeholders in CTTI efforts to improve clinical trials. She also implements strategies to enhance awareness of CTTI’s work, particularly with patient advocates, and to extend the impact of CTTI results and recommendations. During the past 15 years, Ms. Patrick-Lake has founded and led several non-profit organizations including the PFO Research Foundation, which she started in response to the lack of definitive scientific information regarding the condition of patent foramen ovale (PFO). Ms. Patrick-Lake has served as a patient representative at the FDA on a variety of advisory committees and panels, in workgroups for EMA and NIH/NINDS, as a guest lecturer and an external reviewer for IOM, and as a key stakeholder for AHRQ and PCORI grants. She is a member of the ACC Foundation Patient-centered Care (PC3) Shared Decision Making Workgroup, the DIA Patient Fellowship Selection Committee, the TVT Registry Stakeholder Advisory Committee, and is a board member for the Alliance for Headache Disorders Advocacy. She is a frequent guest lecturer on patient issues and clinical trials, both nationally and internationally. She holds a BS (zoology) from University of Georgia and a master of forensic sciences degree from National University in La Jolla, CA.