Patient Responders

Rosie is a widow, mother, grandmother, and an educator. In August of 2009 she underwent a total right knee replacement that developed into a MRSA staph infection. This healthcare acquired infection has led to 58 surgeries, over 200 hospitalizations, 100 blood transfusions, a right leg amputation six inches above the knee, then two years later a total hip amputation with the removal of part of her pelvic bone during another surgery. She also experienced sepsis and septic shock fourteen times.

As Rosie continues to battle this infection in her body, she is driven to share her story of survival. Every day she uses the story of her journey to advise or advocate for others. Rosie believes in helping patients and caregivers find their voices. Today, she uses her story to co-design with medical professionals and researchers and to advise and advocate for patients and their caregivers.

Carl Boyd is the Community Liaison for the Camden City Partnership in Camden NJ at Center for Family Services. In this role, he connects with community partners and other programs that can help serve residents and the community in the city of Camden. He would describe his role as a connector. Through meetings and collaborating with community partners he connects people to resources that create a positive benefit in their lives. He is also a National Consumer Scholar, Community Advisory Committee member and an Ambassador for the Camden Coalition. Volunteering with the Camden Coalition at this level gives him a unique opportunity to use his lived experiences to help people in a meaningful way. On November 2, 2022, he shared his testimony about his battle with Covid Pneumonia and Long Covid during a public hearing with the NJ Department of Health’s Covid-19 Pandemic Task Force on Racial and Health Disparities at Rutgers University in Camden NJ. This started his journey down the road of patient advocacy. His personal philosophy is every person has something to bring to the table in the way of helping people and their community. His vision is that we as individuals and the community realize what those talents are so we’re better able to serve each other and create value in our community.

My name is Emily Cowen. I’m from Bloomfield, Connecticut. I have a physical disability called athetoid quadriplegic cerebral palsy. I am a member of multiple advocacy groups that advocate for disabled people, which are Camden Coalition, KASA (Kids as Self-advocates), YASA (Youth as Self-advocates), Youth Steering Committee (also Website Committee), Caregiver Coalition, Connecticut Council for Developmental Disabilities, and People First of Connecticut. I graduated from Sacred Heart University in December 2022 with my bachelors degree in psychology, and I hope to become a therapist in the future. When I’m not busy with my jobs, I enjoy spending time with my friends and family, listening to music, and watching Netflix. I also love Starbucks.

Maryjan Fiala is a dedicated advocate for families of young children who experience recurring or extensive hospitalization. Maryjan’s youngest son was born 17 weeks premature and spent nearly 19 months inpatient between two hospital systems. At the time of his second discharge, her son was ventilator and feeding-tube dependent and required continuous monitoring and care. Maryjan is committed to using her lived experience and professional background in adult learning to enhance patient-provider interactions and parent-provider communication. When sharing her perspective as a parent, Maryjan emphasizes patient-centered care, empathetic and compassionate communication, and cultivating mutual trust. Through the adult learning lens, Maryjan offers insights into the learning journey that begins when a parent is catapulted into the realm of critical health care and the scaffolding necessary for that parent to thrive as an informed advocate and caregiver for their child with chronic illness. In addition to sharing elements of her son’s journey with local medical students and resident physicians, Maryjan has co-presented at regional and national conferences for clinical and allied health providers. She looks forward to providing detailed feedback on presentations to support patient and family engagement.

Italia Folleco is a therapist, educator, and couples group facilitator. She volunteers at Joe DiMaggio Children’s Hospital and is the current chair of the Patient & Family Advisory Council, and a member of the hospital's Behavioral Health Committee. Italia holds a bachelor’s degree in Psychology from Bloomfield College, a master’s degree from Kean College in Counseling Psychology, and earned a post-masters certificate and completed doctoral work at Nova Southeastern University in Systemic Marriage and Family Therapy. Italia’s passion for helping families facing life’s greatest challenges stems from her journey as a parent who lost her 12 yo daughter to the side effects of chemotherapy for the treatment of Osteosarcoma, a rare childhood cancer. Italia was the recipient of the "2023 Spirit of Healing Award" from Joe DiMaggio Children's Hospital, an award that recognizes excellence, community service, and a commitment to the hospital system.

Cynthia is committed to fighting mental health stigma. She has direct service expertise managing chronic health conditions, disability, and substance use/abuse as well as advocating for addiction recovery. Cynthia advocates for everyone seeking to learn how to live life on life’s terms without the use of mind-altering or mood-changing substances that change their reality into non-reality. Cynthia wants to inform providers and system leadership about the challenges of pain management and chronic illness for consumers with substance use disorder as well as give back to her community in the form of increasing support for individuals living with multiple health challenges. Cynthia was born and raised in Houston, Texas, and has lived in Berkeley, CA since 1970.

Jane Hash has been a healthcare consumer advocate for many years. Throughout her advocacy career she has worked with prestigious organizations such as Community Catalyst, Camden Coalition, and the International Consortium of Health Outcomes Measurement (ICHOM.) She has also had the privilege of sitting on the Board of Directors for UHCAN Ohio until she moved to California where she now holds an elected position on CenCal’s Community Advisory Board.

Angela James is a Nationally Certified Family Peer Specialist and a CA Medi-Cal Certified Peer Support Specialist. She has provided direct Family Peer services for 7.5 years in Alameda County, CA. Angela specializes in disability, medical, and life altering/life ending conditions within a family complicated by additional crisis and complex circumstances i.e. navigation of systems- medical, social services, education, criminal/juvenile justice, learning and building self-confidence/worth/love and advocacy skills, recognizing isolation factors, identification, and building community, and bridging the gaps between family and providers. Angela is highly educated, decorated, and recognized as a leader within the Family Peer community. She is available for consultation. Angela facilitates trainings and workshops around the country.

Kelly Loyd is a volunteer patient and family advisor at the Medical University of South Carolina (MUSC) in Charleston. She comes to this work as the mom of 16 year old twin girls who were born almost three months early. Their prematurity resulted in extensive stays in the Neonatal Intensive Care Unit at MUSC - 77 days for one and 31 days for the other. For almost 12 years, Kelly has partnered with care team members across the MUSC Health system to promote a culture of patient- and family-centered care. She has accumulated almost 4,000 volunteer hours serving on Patient and Family Advisory Councils, writing and reviewing patient-facing documents, collaborating on quality and safety initiatives, and participating in the design of new facilities.

Kateryna Metersky, who is currently an Assistant Professor at Toronto Metropolitan University and a registered nurse in General Internal Medicine at the Toronto Western Hospital - University Health Network, has been a patient-partner with Centre of Advancing Collaborative Healthcare and Education (CACHE) since Fall 2022. Kateryna experienced a sudden onset of an illness in Spring of 2019 that has since become chronic in nature. Kateryna is also a caregiver to a child who has a severe form of epilepsy and a parent who has a significant number of co-morbidities. These life circumstances have required consistent and ongoing interactions with a variety of healthcare providers and organizations, some of which have been positive, while others have presented significant challenges. These challenges have included a diminishing of Kateryna's voice as a patient and family member/caregiver or involvement in decision making, lack of sufficient care coordination and navigation support, poor inter and intra-personal communication, to name a few. In her role at CACHE, but also as a nursing professional, Kateryna shares, publishes on, writes poetry about, and disseminates her experiences, struggles, and successes to her nursing and health professions students and colleagues, other patients and caregivers/family members, and wider audiences so that current and future healthcare providers can learn with, from, and about Kateryna to enhance care delivery for their current and future patients.

Sarah has spent her life navigating the healthcare system as a patient. As a result, she has seen the benefits of family and professional partnerships firsthand. She was a Family Leader for Boston University’s Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN). She is one of the coauthors of The Health Resources & Services Administration’s (HRSA) Blueprint for Change. Connect with Sarah though her website: http://www.sarahkperkins.com/index.html

Lawrence 'Rick' Phillips lives with his wife Sheryl in Indiana, USA. Rick was diagnosed with type 1 diabetes in 1974, Rheumatoid Arthritis in 1999 and Chronic Kidney Disease in 2022. Rick advocates for fair access to medications and services in all three communities. Rick is a current member of the FDA subcommittee for arthritis. Rick is often called on to discuss life with chronic illness, which he does with sincerity and humor, using his nearly one-half-century journey as a patient to illustrate his understanding of chronic illness.

Rick values his many associations with difference-makers in diabetes, arthritis, and chronic kidney disease communities. In 2023 he was an associate author of two published papers about Rheumatoid Arthritis. He loves his family, especially his wife of over 46 years, two sons, and three grandchildren.

Education:
1979 - BSPA – Indiana University
1989 – MPA – Indiana University
2012 – Ed.D. – Nova Southeastern University
2023 –- present - Lay Minister training Commissioned 06/2024

Aracelis Quiñones is the coordinator of Poder Latino, part of the Latino Commission on AIDS. The group of HIV-positive Latinos meets monthly for training on AIDS policy and advocacy and on ways to take care of themselves in order to improve health outcomes and boost self-esteem. She is a survivor of not only HIV but also hepatitis C , substance abuse and domestic violence. She has educated Spanish-speaking communities about viral suppression and access to and retention in care and has helped develop information around promoting U=U, decreasing stigma and aligning HIV participants with their role in ending the HIV epidemic. The Puerto Rican–born advocate is a proud mother and grandmother.

My name is Cameron Rankin. I am a patient, an active patient partner and a research subject for various projects as well as a scorekeeper for men's hockey and elite youth hockey. My life as a patient began in November 2004 when I ruptured a disk and tore the sheath on my spine leaking spinal fluid. I had surgery and they were unable to decompress my spine which resulted in nerve damage. After two years I was able to walk with braces and canes. In June 2006, I discovered I had pressure sores on both heels, one healed, and one got MRSA, a superbug. After that was years in Hospital VRE, another superbug, hundreds if not thousands of clinic and home visits, and 22 surgeries - the last of which was a lower left leg amputation. That brings me up to date. Except to say I now live in one of the best areas in the country for services to those with spinal cord injuries.

Dionne L. Stalling, founder and Executive Director of Rare And Black, is an advocate who champions Black individuals facing rare medical conditions. Despite her personal battle with nine rare conditions, she is a relentless force for change. Dionne’s organization, Rare And Black, focuses on breaking down healthcare barriers, advancing research, and building a supportive community for underserved individuals. Her advocacy extends beyond awareness to ensure equitable access to resources. Dionne is an alum of Washington University’s Community Research Fellows Training program, a newborn screening ambassador, and an award-nominated patient advocate. She is a beacon of hope, offering her unwavering commitment and compassion to improve the lives of those often overlooked in the healthcare system.

Janice Tufte brings more than a decade of collaboration experience with communities, identifying social determinants of health, addressing disparities and health equity through in person and digital project development and implementation efforts. Since before and at the beginning of the COVID19 pandemic, Janice has incorporated her expertise to advise on person-public-patient-consumer involvement for better care, better health and policy knowledge translation for the common good. She specializes in recognizing structural and systemic gaps within healthcare and social driver frameworks and has initiated equity focused projects that connect communities, people and or services to one another. In 2004, she developed the Emergency Muslim Resource Guides - a project focussed on poverty awareness with a solution-based offering. Fast-forward to 2012, where Janice was integrated within a research team at Kaiser Washington Health Research Institute as a patient co-investigator, where the team’s Community Resource Specialist intervention learning health system implementation was so successful that it has since scaled to all 26 Kaiser Washington State Clinics. In 2014, Janice became a PCORI Ambassador. She has since offered her experience and expertise to such groups as the New York Academy of Medicine, Cochrane, the National Academy of Medicine, and Academy Health. Most recently, she has been involved with clinical guideline development serving as a public panel member at the American College of Physicians and joined Guidelines International Network to learn more about clinical guidelines and to continue to look for gaps where guidelines should and can be developed with patient/public partnerships. As an engaged citizen scientist focused on equitable health drivers, Janice is involved in advancing the evidence generation ecosystem—from research to guidance to dissemination.

Naomi D. Williams is a perfectly imperfect person on a mission to empower individuals and families to live their best life, now. As a Life Doula, she helps people navigate and process major life altering events. Naomi believes anyone and everyone can and should lead an exceptional life. She is the proud mother of a former 26-week preemie who lives with a host of diagnoses that fall under the primary umbrella of spastic quadriplegia cerebral palsy. She uses her and her son’s past and present experiences to inform and partner with healthcare systems as they live out the consequences of not being considered a valuable member of their care team. Naomi is the author of And God Remembered: A mother’s heart-opening journey through 22 weeks in the NICU. When not advocating for her family or others, you can find Naomi getting lost exploring nature or taking a deep breath on her yoga mat.