Amplifier profiles

Alayna Tillman

Areas of Expertise: Consumer advocacy, caregiving and support for caregivers, Alzheimer’s disease, dementia and memory loss, older adults and aging

Bio: Alayna Tillman is a wife, mother, grandmother, and activist who grew up in Queens, New York. God took Alayna and her family on a 12-year caregiving journey to provide care for her mother, father, and aunt in her home. As a way of saying thank you to the organizations that helped her family navigate this journey, Alayna became an advocate to work alongside them. She also became a support group facilitator for family caregivers as a way to share what she learned with members of the community. She has spent years as a member of the Community Advisory Board for the Los Angeles Caregiver Resource Center of USC, a member of the Community Advisory Board and the Speakers Bureau of Alzheimer’s Los Angeles, a member of the Alzheimer’s Congressional Ambassador team, and an advocate for Leeza’s Care Connection in Burbank, California. When she has free time, Alayna enjoys spending time with her family, doing genealogy research, and playing word games.

Experience:

• Community Advisory Board for the Los Angeles Caregiver Resource Center of USC, 2012-2015
• Community Advocate and support group facilitator for the Los Angeles Caregiver Resource Center of USC and Alzheimer’s Los Angeles, 2015-present
• Member of the Community Advisory Board and the Speakers Bureau of Alzheimer’s Los Angeles, 2018- present
• Member of the Alzheimer’s Congressional Ambassador team, 2016-2018
• Advocate for Leeza’s Care Connection in Burbank California. 2014-present
• National Consumer Scholar, 2017 and 2018
• Presenter on the National Center webinar “Supportive housing from a consumer perspective”, 2019
• Member of National Planning Committee for Putting Care at the Center, 2019-present
• Workshop presenter, “Engaging and empowering consumers’ family caregivers in complex care” at Putting Care at the Center 2019

Alyce Luna

Areas of expertise: Trauma informed care, patient-centered care, children with medical complexities and children with special health care needs, family and community engagement, cross-sector collaboration, equity, diversity and inclusion, systems improvement, disability rights, access to care, care coordination, rare disease advocacy

Bio: Alyce Luna is the mother of four children, all of whom have their own special health needs, including autism, epilepsy, learning disabilities, and a rare brain malformation. Her passion lies in bridging the gap between families and professionals and fostering equity in healthcare settings. Having life experience as a single mother and a married mother, and in a family blended not only by marriage but also by race and economic background, she believes that all are deserving of access to meaningful healthcare and related services. In addition to her lived experience, Alyce has a variety of professional experiences in healthcare including working with families affected by traumatic brain injuries by providing in home respite and supporting their activities of daily living, working as the Business Director of an assisted living home, and working in the corporate office of a local hospital system. She has collaborated with various health organizations on national, state, and local levels, and feels very grateful for any opportunity to help families and professionals navigate healthcare systems to support favorable health outcomes for all.

Experience

• Panelist for “Centering the Voices of People with Lived Experiences” at the American Hospital Association Accelerating Health Equity Conference, 2022
• Panelist for “Complex Care Core Competencies Curriculum Development Team” at the Nexus Summit, 2022
• Family Engagement Month Planning Team, Exceptional Children’s Assistance Center, 2022
• Family Leadership Conference Planning Committee, Exceptional Children’s Assistance Center 2022
• Institute Presenter, General Session Presenter, 71st Annual Exceptional Children’s Conference, NC Department of Public Instruction 2022
• National Consumer Scholar, 2021-2022
• Board of Directors for Amazing Grace Advocacy
• Family Partner with the North Carolina Department of Health and Human Services’ Division of Child and Family Well-Being, 2019- present
• Participant, Path for Children’s Complex Care Coalition of North Carolina (Path-4CNC), 2021
• North Carolina Commission for Children with Special Health Needs,  2021
• Planning for the “Care of the Whole Student”, North Carolina School Nurse Conference, 2019

Aracelis Quinones

Areas of Expertise: Substance abuse, HIV/AIDS, Hep C, homelessness, the LGBT+ community, Spanish speaking and Latino communities, event planning, public speaking, group coordination & facilitation

Bio: Aracelis Quinones is the Coordinator of Poder Latino (Latino Power), a group for people living with HIV/AIDS, and a woman living with HIV for the past 34 years. She is passionate about her work with underserved and Spanish-speaking HIV+ communities. After moving from Puerto Rico to New York, she started working in the social services field with the Coalition for Hispanic Family Services in Brooklyn where she assisted facilitating an HIV positive women’s group and advocated for clients’ rights. Aside from her work as a coordinator with Poder Latino, one of the longest-lived HIV education and support programs with Latinos in the U.S, since 1998 she has worked with the Latino Commission on AIDS, advocating and fighting HIV stigma. In her spare time, she loves to spend time with family and friends, cooking, doing research on the internet, and giving a hand to those in need, especially women living with HIV.

Experience:

• HIV counselor and group coordinator with Latino Commission on AIDS, 2000-present
• Workshop facilitator- Voces Latinas, 2015-present
• Group facilitator with Iris House, 2017-present
• Panelist on social determinants of health at Academy Health Annual Research Meeting, 2022
• Webinar presenter “Thriving and surviving after a medical diagnosis: Strategies for patients and providers” – National Center for Complex Health and Social Needs, 2022
• Workshop presenter at Putting Care at the Center, 2022
• Panelist on ‘internalized stigma” at Howard University’s International Conference on Stigma, 2022
• Center for Disease Control & Prevention (CDC) Community Ambassador, 2022
• HIV Ambassador with ViiV Healthcare, 2020
• Peer Specialist with Harlem United, 2014-2018

Andre Davis

Areas of expertise: Addiction and recovery, mental health, homelessness

Bio: Andre Davis prides himself in being a positive role model for his community. He is an advocate for those experiencing homelessness, mental health challenges and substance abuse, and strives to give back to others what was given to him: an opportunity to overcome the sickness and suffering of active addiction. Andre has been working with the Camden Coalition since 2017 when he was introduced to the Camden Coalition care team staff during a hospitalization. Since then he has become an active member of the Camden Coalition’s Community Advisory Committee and Housing First Support Group. He has shared his lived experience as a panelist at Robert Wood Johnson Foundation’s annual grantee gathering, at the New Jersey state legislature, and in Washington, D.C. In his free time, Andre enjoys reading, riding his bike, feeding the birds, and talking with his mother and children every day.

Experience:

• Camden Coalition Community Advisory Committee Member, 2018-present
• Camden Coalition Community Advisory Committee Co-Chair, 2019-present
• National Consumer Scholar, 2019-2020
• Panelist for “Effective Community Engagement in Addressing Social Determinants of Health for Transformation,” at the Robert Wood Johnson Foundation Transforming Health and Health Care Systems Annual Grantee Gathering, 2019
• Camden Coalition Housing First Group Participant, 2018-present
• Active member of Narcotics Anonymous, 2018-present

Cisily Brown

Areas of expertise: Educating youth, teenage family planning, childhood trauma and abuse, equal opportunities for minorities and racism

Bio: Cisily Brown is a mother of four children, advocate, motivational speaker, member of several self help groups, and a lover of music. Cisily is passionate about helping communities have better access to the family supports, education, resources, and leadership that they need to thrive. Cisily is a proud 2019-2020 participant of the National Consumer Scholars program. She has shared her lived experiences at several venues, including the 2019 Putting Care at the Center Conference – with the hope of bringing awareness to issues including childhood sexual abuse.

Experience:

• Camden Coalition Community Advisory Board Member, 2018-present
• National Consumer Scholars, 2019-2020
• Panel presenter in Patient Engagement Plenary at 2021 Nexus Summit
• Patient storyteller at QIP-NJ Learning Collaborative Session, 2021
• Take Back Our Health: Stories of Healing story sharing event in Camden, NJ, 2019

Connie Montgomery

Areas of expertise: Bleeding disorders, healthcare disparities, diversity equity, and inclusion, and the importance of authentic communication in the healthcare setting

Bio: Connie Montgomery is a mother, wife, author, retired business owner and occupational therapist, a patient and family advocate, and a successful international orator. She is passionate about her work as a community builder in the bleeding disorder community. Ms. Montgomery works closely with the National Hemophilia Foundation as a member of the Steps for Living Task Force, Annual Conference Planning Committee, the Cultural Diversity Working Group, and the Rare Steering Committee for bleeding disorders. She has received two national awards for her service in the healthcare arena, and has developed and delivers heath care trainings, including: Hear with your Eyes and See with your Heart: Compassionate Healthcare. In her free time she loves to travel.

Experience

• DEI Chairperson Board of Directors – nSpiration Foundation
• National Patient and Family Partner – PFCCpartners
• National Consumer Scholar, 2021-2022
• MUSC Health – PFAC, Family Faculty, Art Committee, and Statewide Emergency Dept. Committee
• The expert panel member for the Centers for Medicaid and Medicare Quality Measures Program
• The National Epic Patient and Family Advisory Council for the development of patient portals
• Speaker/ presenter/ moderator for the National Hemophilia Foundation, New York, NY
• Diversity, Equity, and Inclusivity in Bleeding Disorders w/ Connie Montgomery — BloodStream Media
• Health Affairs Briefing: Caring for Those with Complex Needs | Health Affairs
• Black Women with Bleeding Disorders Are Striving to Be Seen and Heard

Cynthia Gibbs Daniels

Areas of expertise: Addiction and recovery, substance abuse counseling, mental health counseling and support, healthcare and health advocacy

Bio: 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.

Experience:

• Alameda County Care Connect Consumer and Family Fellowship, 2018-present
• Alameda County Pool of Consumer Champions, 2012-present
• National Consumer Scholar, 2019-2020
• Member and meeting facilitator, Narcotics Anonymous, 1991-present

Dennis Heaphy

Areas of expertise: Disability rights, intersectional policy development to advance health equity, local/state/national advocacy, community-based and broader participatory action research

Bio: Dennis is a Health Justice Advocate at the Disability Policy Consortium (DPC), a cross-disability civil rights organization in Massachusetts. His activities include: co-chair to Disability Advocates Advancing Our Healthcare Rights (DAAHR), a statewide grassroots disability coalition; chair to Massachusetts dual eligible demonstration “One Care Implementation Council”; vice-chair of MA Delivery System Reform Incentive Payment (DSRIP) Program advisory committee; and several national committees. He also heads DPC’s YesHealth Participatory Action Research team. One project being undertaken is research on the experiences of people with disabilities and a co-occurring opioid substance use disorder. Dennis is committed to advancing equity at the intersectional level to address intentional discrimination and/or de facto biases towards persons with disabilities who are members of racial and minority populations. This requires tackling disparities in health access and outcomes for persons with disabilities due to racism and other SDOH.

Experience:

• Co-chair Disability Advocates Advancing Healthcare Rights (DAAHR) – 2011-present
• Chair MA Dual Eligibles Demonstration Implementation Council – 2014-present
• Vice-chair MA Delivery System Reform Incentive Payment (DSRIP) program – 2017-present
• National Center for Complex Care and Social Needs Advisory Committee – 2018 – present
• United States of Care (Founders Council) -2018-present
• Disability Policy Consortium Healthcare Advocate

Jamal Brown

Areas of expertise: Health, homelessness, addiction and recovery, mental health and well-being, spirituality and inspiration

Bio: Jamal Brown is an inspirational community member, father, coach, and mentor who strives to set a good example for the next generation. He was inspired to do this work because he knows what it is like not to have the type of encouragement he now gives to others. Jamal is an active member of Camden Coalition’s Community Advisory Committee and Housing First group, an alumni of the National Consumer Scholar program, and a Camden County NuEntry Opportunity Specialist where he helps people who are leaving incarceration to integrate back into society and not feel alone. In 2019 he shared testimony at the New Jersey State House of Representatives to support passage of a bill to improve access to state IDs and driver’s licenses. In his free time, Jamal enjoys playing video games, reading the Bible, and spending time with positive people.

Experience:

• Camden Coalition Community Advisory Committee member, 2018-present
• Webinar presenter “Thriving and surviving after a medical diagnosis: Strategies for patients and providers” – National Center for Complex Health and Social Needs, 2022
• Camden Coalition Housing First group participant, 2018-present
• Co-chair of Camden Coalition Community Advisory Committee- 2021-present
• National Consumer Scholar, 2018
• Camden County NuEntry (re-entry) Opportunity Specialist 2018-present

Janice Tufte

Areas of expertise: Patient-centered research, social determinants of health, evidence and quality improvement, health equity and disparities

Bio: Janice Tufte is involved with health systems research focused on social probabilities of health and disparities. She advocates for patient-centered outcomes and care quality improvement. She was born, raised and currently lives in Seattle, WA. Her broad range of lived experiences helps to inform her health policy and practice engagement efforts. She has served as a Patient Partner, National Consumer Scholar, and Advisor in a number of organizations including: the University of Washington, National Quality Forum, Kaiser Permanente Integrated Patient and Family Centered Care, Healthcare for the Homeless, Institute for Patient and Family Centered Care, Cochrane, Academy Health, Ludwig Boltzmann Institute, American College of Physicians, and the National Center for Complex Health and Social Needs. Janice loves to visit museums, take nature walks, downhill ski, and spend time with the community.

Experience:

• Patient Centered Outcomes Research Institute PCORI Ambassador, 2014-present
• Keynote speaker at Local Indigent Care Needs grantee convening, 2021
• Patient Advisor on the University of Washington CERTAIN Patient Advisory Network, 2015-present
• Patient and Family Centered Care National Health IT Advisory Council Member, 2017-2021
• Participant on multiple Healthcare for the Homeless SKC Governance Committees, 2018-2021
• Read more about Janice’s work at https://janicetufte.com/
• Participant in co-developing human readable computable scientific terms, providing plain language perspectives at FEViR.net for medical evidence interoperability opportunities, 2020-present

Joanne Guarino

Areas of expertise: Addiction and recovery, homelessness, sexual abuse

Bio: Joanne is a handicapped woman and educator who lives outside of Boston, MA. She is a surivor of sexual abuse and has overcome 30 years of addiction and homelessness. Through her journey of recovery she has become a better woman, mother, grandmother, and friend. She believes it is important to speak about difficult subjects because all people have the right to be heard. She has worked extensively as a Community Advisory Board member with Healthcare for the Homeless both nationally and in Boston. In her free time, Joanne enjoys cooking with her sisters, watching old movies, and spending time with her grandchildren.

Experience:

• Community Advisory Board Member for Boston Healthcare for the Homeless, including participant on HIV/AIDS subcommittee, 2005-present
• Community Advisory Board Member for National Healthcare for the Homeless Council, 2008-present
• Founding Member of “BAChome” Mayor’s Community Advisory Council on Homelessness, 2015-present
• National Consumer Scholar, National Center for Complex Health and Social Needs
• Creator and facilitator of “Safe for Me Too” training (addressing topic of sexual assault against homeless women)

Jonathon Harp

Areas of expertise:  Addiction and recovery

Bio: Jonathon identifies as a person in long-term sobriety from all mind-altering substances. When he found sobriety, he found a new life that he did not know was possible to have. Jonathon is committed to his work in addiction recovery because he wants to be able to provide hope where there is none to support those still struggling with addiction. Jonathon uses his positions as a Peer Recovery Specialist, Health Coach, and Recovery Coach at Centerstone, a behavioral health and addiction services provider, to be the voice of people that are still struggling with addiction. Over the years in these roles, he has had wonderful opportunities to help people working in the field of complex care to view addiction in a different light.

Experience:

• Panel participant representing DCS & Centerstone at the first Annual South Central Indiana Opioid Summit, 2017
• Panelist, “Engaging Patients in Care Decisions and as Partners in Quality Improvement” at QIP-NJ Behavioral Health Learning Collaborative Session, 2021
• Panel participant representing Centerstone and Indiana University Health at the Annual South Central Indiana Opioid Summit, 2018
• Panel participant representing Centerstone at Annual Putting Care at the Center Conference, 2019
• Presentations on living through addiction and recovery to case managers and others at Indiana Department of Child Services (DCS), Indiana University, Indiana University Health System (2014-present)
• Advisory Board Member at Centerstone Health Services’ Federally Qualified Health Center
• Certified Peer Trainer

LaKeesha Dumas

Areas of expertise: Mental health, addiction, peer support, behavioral health, consumer engagement, community engagement, systems integration, trauma-informed care, advocacy, and clinical care teams

Bio: LaKeesha Dumas was born and raised in Portland, OR where she has seen first-hand the gentrification, gang violence, drug epidemic, and trauma faced by her community. She currently works as the Office of Consumer Engagement Coordinator for Multnomah County, Oregon and has a wealth of knowledge through her work as well as her own lived experience in recovery from a substance abuse disorder and mental health challenges. Since being in recovery, she has worked tirelessly to help her community foster hope and connect with the appropriate resources to become healthier and overcome barriers to recovery. LaKeesha is certified by the State of Oregon as a Community Health Worker, Peer Wellness Specialist, Adult Addictions Peer Support Specialist, Adult Mental Health Peer Support Specialist, and Youth and Young Adult Peer Support Specialist. In her work, she helps to pave the way for more peers and people with lived experience to be at the tables where decisions are being made about consumers’ health and needs.

Experience:

• Healthshare Board of Directors, 2020 – Present
• Chair of Traditional Health Worker’s Commission,  2014 – 2020
• Portland Committee on Community Engaged Policing,  2018 – 2019
• MetroPlus Association of Addiction Peer Professionals, 2018 – Present
• Regional Behavioral Health Collaborative- Communities of Color, 2019 – Present
• Peer Delivered Services Core Team, 2018 – Present
• Co-Director, Community Relations Black Resilience Fund, 6/2020 – Present
• Steering Committee Member of Oregon Recovers, 2018 – Present

LaRae Cantley

Areas of Expertise: Advocacy, social justice, housing justice, systems change, community engagement, “edutainment”, and diversity, equity, and inclusion

Bio: LaRae Cantley is an advocate, facilitator, social justice activist, community leader, and relationship builder. She leverages social justice activism through consultation and partnerships with government, nonprofit, community academics, philanthropy, and businesses servicing human dignity. She is the Senior Manager of Community & Wellbeing with the Full Frame Initiative where she led a team of people with lived experience to author the Community Bill of Rights. She curates opportunities such as the Housing Justice LA podcast that infuses and operationalizes the vital element of the voice representation of people who are most proximate to the harms of inequities in order to co-create designs for regenerative policies, programs, and services. LaRae has lived experience at the intersection of many of our systems and brings a passion and commitment to seeing people as whole and recognizing and tapping into their talents, skills, and tremendous gifts. LaRae enjoys artistic expression to uplift and encourage thought as a means of liberation.

Experience:

• Diversity, Equity, and Inclusion Independent Consultant and Coach with Cantley & Associates, aka Care Out Loud, 2010 – present
• Fellow with the Domestic Violence Homeless Services Coalition, 2018 – present
• Senior Manager Centering Community and Wellbeing with the Full Frame Initiative 2021- present
• Webinar presenter “Thriving and surviving after a medical diagnosis: Strategies for patients and providers” – National Center for Complex Health and Social Needs, 2022
• Workshop presenter at Putting Care at the Center, 2022
• Member of the Alliance for Health Policy’s National Public Health Emergency Flexibilities Policy Working Group, 2022
• Recipient of the Downtown Women’s Center “Every Woman Award”, 2022
• Recipient of the California Partnership to End Domestic Violence’s “Bravery Award”, 2022
• Trainer/Facilitator “Storytelling to advise design with the people in heart & mind”, 2021
• Racial Equity Facilitator with the Corporation For Supportive Housing, 2019 to 2020
• Host of the Housing Justice LA podcast, 202
• Panelist on Downtown Women’s Center: Women & Homelessness in LA, 20202
• Panelist “The Truth Behind Mental Health and Homelessness. Which Comes First?”, 2020

Mia Matthews

Areas of expertise: Caring for kids with complex medical needs at home, patient-centered care, advocacy, coping with the loss of a child, improving the patient/provider relationship

Bio: Mia Matthews of Baltimore, Maryland is an honored advocate for kids with complex medical needs and full time cool mom. She is committed to fighting for kids who have tracheostomies and are ventilator-dependent on receiving high quality nursing care inside their homes. Mia has introduced two bills in the Maryland General Assembly Legislature in 2019 and 2020 that have a focus on improving nursing education for home health nurses who care for kids with complex medical needs. She serves on the Johns Hopkins Pediatric Family Advisory Committee, Mount Washington Hospital Family Advisory Committee, Board Member at PACT: Daycare for Children with Special Needs and the Global Tracheostomy Collaborative Patient and Family Committee. When Mia is not fighting to raise awareness on the importance of additional home health education, she enjoys spending time at home and walking in her neighborhood.

Experience:

• Board of Director at PACT: Helping Children with Special Needs, July 2018 – Present
• Member of Johns Hopkins Children’s Center Pediatric Family Advisory Council, March 2016 – Present
• Member of the Mount Washington Pediatric Hospital Family Advisory Council, May 2016 – Present
• Member of the Baltimore City Commission for Women, Women in Leadership Committee, June 2019 – Present
• 2019-2020 National Consumer Scholar, National Center for Complex Health and Social Needs

Naomi Williams

Areas of expertise: Disability rights, advocacy, care-giving, children with complex needs, maternal health, grief, wholistic wellness, health literacy, health equity, community engagement, and systems change.

Bio: 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. Naomi uses her experiences as a grief coach and yoga instructor to inform her work as an advocate and systems navigator. 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.

Experience

• National Advisory Committee Member for the Advancing Health Equity Learning Collaborative, 2022-present
• Panelist at the Alan and Janet Roberts Memorial fund Community Roundtable in bioethics: Building Trust in Health Services: What’s Needed?, 2022
• National Consumer Scholar, 2021- 2022
• Patient Family Advisory Committee Liaison for the Patient-Centered Complex Care Research Agenda project, 2021-2022
• Georgia Council on Developmental Disabilities Public Policy Fellow, 2020-2021
• IHI Conversation Project: Pediatric Starter Kit – For Caregivers of a Child with Serious Illness, 2020
• Mind, Body, Spirit: An Integrated Approach to Fitness Family Perspective article, 2020
• Principal in the 6,000 Waiting documentary, 2019

Olivia Richard

Areas of expertise: Housing, disability rights, activism and advocacy, health equity, healthcare quality and improvement

Bio: Olivia Richard is an advocate who fights to make sure disparities in disability rights, housing, and healthcare are recognized and addressed. Her lived experience with how the world treats people with physical disabilities inspires her to do this work. She advocates for change with tenacity, determination, and the occasional touch of humor. She has a Bachelor’s of Arts in Psychology from the University of Massachusetts-Lowell as well as an education from the school of hard knocks. When Olivia is not roaming the halls of legislature buildings, she’s playing video games, watching YouTube, fixing wheelchairs, and enjoying Boston’s entertainment spots with her friends.

Experience:

• Boston Disabilities Commission Advisory Board, 2018 – present
• Center to Advance Consumer Partnership National Advisory Council, 2018 – present
• CHAPA Board of Directors, 2018 – present

Quiana Womack

Areas of expertise: Peer specialists and the peer workforce, patient and healthcare advocacy, navigating health and social service systems

Bio: Quiana Womack is a Certified Nurses Aide of 23 years as well as a unit clerk working in Delaware County, Pennsylvania. In 2016, Quiana enrolled in a complex care program with Crozer Keystone, and was eventually connected with a social worker (and now friend) that encouraged her to become an advocate for herself and others. Quiana is passionate about sharing her story to empower peers to advocate for themselves, for their health, and to be heard by healthcare providers. She believes that people are not defined by their limitations. When Quiana isn’t advocating, she enjoys spending time with her family, coloring, making positive collages, and writing poetry while sitting at the riverfront watching the water!

Experience:

• National Consumer Scholar, 2018
• Panelist for “Effective Community Engagement in Addressing Social Determinants of Health for Transformation,” at the Robert Wood Johnson Foundation Transforming Health and Health Care Systems Annual Grantee Gathering, 2019
• Planning committee member and patient storyteller for the Pennsylvania Department of Health’s Office of Health Equity’s regional convening, 2020

Rebecca Esparza

Areas of expertise: Cancer advocacy, legislative advocacy, consumer advocacy, patient advocacy, access to care, caregivers, cancer survivorship, clinical trials, support groups

Bio: Rebecca Esparza, MBA, is a two-time cancer survivor (ovarian and thyroid). She has travelled all over the world to represent cancer survivors at various cancer advocacy activities, speaking engagements, committees and forums. Her long term survivorship of ovarian cancer (20 years) has motivated her to speak up for the underserved and marginalized; especially those without access to healthcare and/or health insurance. As a cancer patient who has experienced a cancer diagnosis with no health insurance, she has assisted countless patients and caregivers access services and programs to assist in their personal journeys. Her passion is making life better for children, whether it’s lovingly spoiling her two nephews or helping dreams come true for critically ill children through her volunteer work with the Make-A-Wish Foundation.

Experience:

• Return to Functional Status Committee Member for the National Coalition for Cancer Survivorship; 2018-2020
• Plenary session panelist at our Putting Care at the Center conference, 2021
• Advocate Leader Program for the Ovarian Cancer Research Alliance (OCRA) 2009-present
• National Cancer Institute Patient Advocate Steering Committee-Ovarian Cancer Task Force; 2020-2022 (appointed)
• Department of Defense Ovarian Cancer Research Program-Consumer Reviewer; 2017-2019
• American Cancer Society Cancer Action Network-Advocate Lead for Congressional District 27
• Esparza Profile in July 2020 issue of Cancer Today magazine
• Article about involvement in Congressionally Directed Medical Research Program
• Speaking engagement to 500 members of the Global Clinical Supplies Group; April 2018
• Survivorship Today with Sterling Brown

Ren Pelley

Areas of expertise: Peer Support, person-centered life planning, storytelling, writing, expressive arts facilitation, consumer-led engagement and life enrichment, advocacy for Peer Specialists and organizations to counter co-optation of Peer Providers

Bio: Ren Pelley, CRSP (she/they) is a Certified Recovery Support Practitioner who works across Southern New Jersey as a Peer Support Specialist and Expressive Arts Facilitator. They use their lived experience with their LGBTQ+ identity, neurodiversity, chronic pain, and mental health recovery not only to support their peers who are facing challenges, but to consult other peer providers in enrichment activities that embody the quote “see what’s strong, not what’s wrong.” Ren was inspired to become a peer specialist during their own time in a mental health outpatient program. They had never met a peer specialist, and for the first time since hospitalization they finally felt “seen,” and found a sense of purpose in bringing that same hope to others. Ren received their diploma as an adult at the Goodwill Industries Helms Academy, received their credentials through the NJ Mental Health Association, and has trained for a year learning recovery-based cognitive therapy for peer providers with the Rutgers and Beck Institute’s CT-R program. They are currently pursuing further education in psychiatric rehabilitation.

Experience

• Alum Guest Speaker at Comcast/Goodwill’s Digital Literacy event, at Goodwill’s The Helms Academy, 2021
• National Consumer Scholar, 2021-2022
• Featured Alum Speaker at Goodwill’s Awards Gala, Union League of Philadelphia 2022
• Featured experience in the publication “Understanding preferred language for ‘people with lived experience’”,  2022
• Interviewed for Core Competencies Curriculum Training Video, Camden Coalition, 2022
• Storyteller and workshop presenter at the Putting Care at the Center Conferences, 2022
• Peer Panelist- Rutgers/Beck Institute CT-R program- New Jersey CT-R Peer Summit, 2022

Rodney Dawkins

Areas of expertise: Homelessness and housing, workforce development training, human rights, community health workers and the peer workforce, healthcare access, and health equity

Bio: Rodney Dawkins is a consumer advocate who fights for many causes, including housing, healthcare, workforce development, and human rights. Rodney believes that people with lived experience should be at the table to help improve healthcare and services for their communities. He is an advocate and mentor for people from underserved communities to make sure they have access to the resources they need to live to their fullest potential. Rodney worked as a community health worker for seven years, and currently serves as a regional representative for Healthcare for the Homeless’ National Consumer Advisory Board Steering Committee. In his free time, he enjoys singing, dancing, and is a lifelong birdwatcher.

Experience:

• National Consumer Scholar, 2018
• Community Health Worker with Heartland Alliance Health- 2013-2020
• National Health Care for the Homeless Consumer Advisory Council- 2020-present
• Participated in various speaking engagements and trainings with National Healthcare for the Homeless Council on topics including:
  • Developing and supporting consumer leadership
  • Consumer engagement recruitment and retention
  • Integrating CHWs into Clinical Practice
  • Consumer empowerment

Sara Reid

Areas of expertise: Health and mental health, gender identity and gender affirming healthcare, diversity, trauma, cross-cultural communication, harm reduction, healthcare navigation, social justice

Bio: Sara is a Health Educator, Support Group facilitator, Boston Healthcare For the Homeless Board and Consumer Board Member, writer, a proud parent of two grown children and grandmother of four. She identifies as a woman of transgender experience. Sara speaks and does trainings on transgender issues, including teaching medical and behavioral health providers how to provide gender affirming healthcare. Sara determined to become part of the solution from the beginning of her transition two decades ago. Outside of work Sara is a self trained botanist, forager of wild plants and fungi, loves Ancient History and experimental archaeology. She sews her own cloths, and writes a blog on Facebook covering topics of interest to her with an emphasis on disseminating information among leaders of the Transgender Community.

Experience:

• Trainings and workshops facilitator at USPATH National Symposium, including a panel discussion on evolution of transgendered healthcare at Boston Healthcare for the Homeless, 2017
• Co-facilitator of Roundtable Session at AHA’s Advancing Health Equity Conference , 2021
• Presenter on Technical Assistance webinar hosted by Center for Health Care Strategies  for Rhode Island’s Accountable Entities Program, 2022
• Health Educator -TransCEND- Cambridge Cares About AIDS, 2012-2015
• Co-chair of National Center for Complex Health and Social Needs’ Core Competency Working Group, 2019-present
  • Blog post: Principles for the complex care workforce: Reflections on developing core competencies
• National Consumer Scholar, 2019-2020
• Member of Boston Medical Center Transgender Taskforce, 2016-2018
  • She has trained large groups of medical professionals and has served as a community member advisor for expanded gender-affirming primary healthcare. Boston Healthcare for the Homeless and Boston Medical Center
• Consumer Advisory Board member, Boston Healthcare for the Homeless, 2012-present
  • Trans Medicine: Ahead of the Curve
• Member of Board of Directors for Boston Healthcare for the Homeless, 2015-present
• Member of “BAChome” Mayor’s Community Advisory Council on Homelessness, 2018-present

Stephanie Burdick

Areas of expertise: Public health, health equity and evaluating policies around the social determinants of health, accessibility to social service programs, community health workers

Bio: Stephanie Burdick is a vocal advocate and survivor of traumatic brain injury in Salt Lake City, Utah. With a public health degree from Brigham Young University, Stephanie uses both her education and lived experience to add capacity to the movement for health equity. Through collaboration with community health workers and other advocates in Utah, she has been able to see the impact of community-centered decision making. Other areas of advocacy include: improving the value of Medicaid and making social service programs widely accessible; reframing the narrative about social service beneficiaries; and most recently identifying and addressing causes of mistrust. Stephanie finds purpose through channeling her pain into systems change; she finds solace in her faith, and she finds joy in hiking Utah’s beautiful mountains with family and friends.

Experience:

• National Center for Complex Care Conference Plenary Speaker, 2019
• Speaker at Utah Brain Injury Conference, 2019
• Speaker at Utah Health Policy Project Healthcare Conference, 2018
• Panelist at Advancing Health Equity Learning Collaborative 1.0 Sunset Session
• Speaker at Utah Health Policy Project Healthcare Conference, 2018
• Speaker at University of Utah Hotspotting Student Conference, 2019
• National Consumer Scholars Program, Camden Coalition, 2018 & 2019-2020
• Panelist, How COVID Impacted Vulnerable Communities, 2021
• Co-chair of Community Health Worker Workgroup for Finance and Advocacy, 2019-present
• Committee Member of Utah’s Medical Care Advisory Committee, 2019-present
• Advisory Board Member of Nonprofit Finance Fund’s ARCH initiative, 2019-present
• Board Member of ACLU-Utah 2019-present
• Board Member of the Disability Law Center, 2018-present
• Member of Utah Brain Injury Council 2020-preset
• Member of Intermountain Patient and Family Advisory Council, 2019-present