Community Engagement: PRIDEnet

What is PRIDEnet? PRIDEnet Participant Advisory Committee (PAC) PRIDEnet Community Partner list

At PRIDEnet, we engage LGBTQIA+ communities to participate in health research.

PRIDEnet is a national network of individuals and organizations that actively engage our community in every stage of how LGBTQIA+ health research is created, analyzed, and shared from The PRIDE Study. Through our Community Partners and an advisory group of health care specialists known as the Participant Advisory Committee (PAC), PRIDEnet builds on decades of work by activists, health advocates, service providers, and researchers to improve the health and well-being of LGBTQIA+ communities.

PRIDEnet is funded by Stanford University and the National Institutes of Health and is staffed by Cassie Armea-Warren, Alex Armira, Mahri Bahati, Micah Lubensky, Daniel Moretti, Ana Rescate and JT Williams.

As a participant, PRIDEnet works to ensure your annual participation with the study is an enjoyable experience:

Access

We want you to be included. Many LGBTQIA+ people have difficulty accessing adequate care and achieving optimal health because of a long history of discrimination, stigma, and medical neglect. Many are also marginalized from health care due to other bias related to age, race and ethnicity, language, class, or legal status.

PRIDEnet wants to know about these experiences in a way most accessible for you. That is why joining The PRIDE Study can be done by telephone or on any web-enabled device (computer, tablet, or smartphone).

Belonging

We want you to feel welcome. Coming out, many LGBTQIA+ people experience rejection from families, friends, and society. Despite these challenges, we remain resilient. Our communities possess a hard-earned wisdom from never backing down in the face of adversity.

PRIDEnet seeks to actively incorporate your input to help doctors and researchers develop a better understanding of the physical, mental, and social health needs of our communities.

Meaningful participation

We want you to be heard. Like many other groups, the voices of LGBTQIA+ people have been left out of research. Where research has included us in the past, results oftentimes stigmatized us further or were used to the detriment of our community. As a result, we know less about our health and ways to provide the best care. PRIDEnet strives to engage your voices in an intentional way by seeking, collecting, and incorporating input from our Community Partners and PAC members.

Our strategic values:

In catalyzing LGBTQIA+ health research, how we do our work is as important to us as what we do.

We develop give-and-take relationships.

As participants, we want you to benefit from our study as much as our projects benefit from your input.

We recognize complex identities and communities.

We respect that many of you belong to multiple communities and hold many identities.

We create equity.

Each of our communities have unique health experiences and needs. Our goal is to work with you in the most appropriate way and not in the same way.

We create transparency.

We want you to know what we’re up to and strive to communicate openly and clearly.

PRIDEnet Participant Advisory Committee (PAC)

Oscar Anderson, RN

Pronouns: he, him, his

Oscar Anderson is a registered nurse and MSN student at Yale School of Nursing, where he is training to be a family nurse practitioner specializing in queer and trans patient care. Prior to going into healthcare, he spent 15 years as a researcher at AARP. His research there focused on older adults and aging, especially technology and media, mental health, and maintaining social connections throughout the lifespan. He also advocated for research on LGBTQIA+ older adults and worked to ensure LGBTQIA+ respondents were represented in the research of AARP and its partners. He holds at BA from Arizona State University in psychology.

Jay Chiocca, MS

Pronouns: He, him, his

Jay Chiocca is a Disabled intersex man who works as a vocational rehabilitation counselor in Central Ohio. His advocacy work focuses on bodily autonomy for all people with special attention to ending nonconsensual medical interventions for intersex people. Jay also educates mental health professionals (and the general population) about intersex topics. He has an M.S. in Counseling from Thomas University, as well as a B.A. in Sociology and a B.A. in Psychology from University of North Florida. In his free time, he plays wheelchair rugby.

Loree Cook-Daniels, MS

Pronouns: she, her, hers

Loree Cook-Daniels, FORGE’s Policy and Program Director, has helped design and co-facilitate FORGE’s multiple in-person and virtual support groups, research studies, and programs since 2000. She has been involved in advocacy, research, training, and services for LGBT populations since 1975, and is nationally-known for her writing, training, and policy work on LGBT aging, trauma and trauma recovery, and transgender issues. Cook-Daniels holds a B.A. in women’s studies and history, an M.S. in conflict management, and a post-graduate Certificate in trauma counseling.

Jewell Crye

Pronouns: She, her, hers / They, them, theirs

Jewell Crye is a public school teacher in Texas. After graduating with a degree in Music Education from the University of Texas at El Paso in 2016, she immediately began teaching music in her local community with a focus on creating a safe and inclusive space for all her students. She is the faculty sponsor of her high school campus GSA, and will begin work on a master’s degree in Education with a focus on Diversity, Equity, and Social Justice in the Classroom in summer ‘24.

Mx. Crye is also an active member of The Planetary Society, a member-funded nonprofit organization dedicated to advancing space science and exploration. She has travelled to Washington D.C. with the Society to meet with legislators face-to-face to advocate for NASA funding.

Additionally, Jewell is a huge Star Wars and D&D fan, combining those passions into an ongoing two-year-long table top game campaign with a group of other queer and neurodivergent nerds. She firmly believes that hobbies, art, and play are necessary to survival, and that the connections we make through these endeavors can be life-long and life-changing.

Jenn Fonseca, MPH

Pronouns: She, her, hers / They, them, theirs

Jenn Fonseca is a Health Education Specialist at a leading cancer hospital in Texas. They were born and raised in Hawaiʻi and earned a Masters in Public Health from the University of Hawaiʻi at Mānoa. Jenn has previously worked in non-profits serving homeless youth and survivors of sexual violence. She is dedicated to the idea that education and prevention can improve the lives of people from all communities and backgrounds.

Tari Hanneman, MPA

Pronouns: she, her, hers

Tari Hanneman (she/her) is the Director of the Health and Aging Program at the Human Rights Campaign Foundation, where she oversees the Healthcare Equality Index, the Long-Term Care Equality Index, and other projects related to LGBTQ+ health and aging. Tari has over 25 years of experience in the nonprofit and philanthropic sector, primarily focused on the areas of health and women’s issues. Before joining HRC, she served as the initial Director of The Women’s Fund of Winston-Salem where she led all aspects of developing The Fund’s programs and brand in the community. Before her move to North Carolina, she served in several roles at The California Endowment, one of the nation's largest health foundations. She has also worked for elected officials and non-profits focused on the environment, reproductive rights, and HIV. She has a Master’s in Public Administration with an emphasis on Nonprofit Management from the University of Southern California.

Devin Hursey

Pronouns: he, him, his

Devin Hursey is an advocate for people living with HIV and public health, from Kansas City Missouri, currently pursuing dual master’s degrees in Public Health and strategic communications at the University of Missouri Columbia. In 2019, Hursey was honored as one of the 40 under 40 in public health by de Beaumont. His local and state work includes: legislative advocacy with the Missouri HIV Justice Coalition, and board membership of Blaqout KC. In addition, Hursey is a steering committee member of the U.S. People Living with HIV Caucus, and a steering committee member of MPACT global action for gay men’s health and rights. Hursey was formerly an appointed member of the CDC/HRSA Advisory Committee on HIV and Viral Hepatitis.

Shalonda Ingram

Pronouns: s/he

Leveraging decades of experience, Shalonda Ingram is an innovator who embodies the mantra: Strategize. Design. Produce.

Born and raised in St. Louis, Missouri, Shalonda is committed to cultivating collective consciousness and empowering communities to take actions that transform their circumstances. Shalonda has produced transformative experiences around the globe with artists, activists, and changemakers. Native to grassroots activism, Shalonda serves social justice, spiritual, and corporate organizations to explore network effect and elevate opportunities for resource sharing. Shalonda influences existing structures to create collaborative environments for communities to thrive. Shalonda is honored to serve Queer+ Communities in the areas of arts presenting, wellness research, placemaking and enterprise development.

Joelle Maslak, BA

Pronouns: she/her

Joelle Maslak is employed as a network engineer for a streaming video company, where she is a leader of an employee resource group. She has over 20 years of neurodiversity advocacy experience, and is particularly interested in the intersection of gender and neurodiversity. She is also involved in AASPIRE (Academic Autism Spectrum Partnership in Research and Education). She co-founded and facilitates a peer support group for trans people on the spectrum. She is currently working towards a second degree in Gender, Women, and Sexuality Studies at Metropolitan State University of Denver.

Asa Radix, MD, PhD, MPH

Pronouns: he, him, his, they, them, their, theirs

Dr. Asa Radix is trained in internal medicine and infectious diseases at the University of Connecticut, and also holds postgraduate qualifications in tropical medicine and public health. Previously Dr. Radix held the position of Associate Medical Director at Callen-Lorde. In addition to having a clinical practice (HIV primary care and transgender health), Asa coordinates electives in LGBT health for medical and nursing students and is an Assistant Clinical Professor of Medicine at NYU and Yale.

Dr. Radix is of West Indian origin and has a special interest in the needs of LGBT populations of immigrant status. For 7 years, Asa was the director of a public health department in the Netherlands Antilles and assisted in the development of insular strategic plans for HIV prevention as well as federal guidelines for communicable disease prevention. Other positions prior to Callen-Lorde have included being the medical director at the University of Hartford, serving a population of 5,000 undergraduates under 24 years of age and being an infectious disease specialist in private practice in West Hartford, Connecticut. A major focus of Dr. Radix’ work has been the development and dissemination of prevention, treatment and care guidelines for HIV+ and at-risk persons in the Caribbean including provision of LGBT cultural competency training to Caribbean healthcare providers.

Dr. Radix is an associate editor of Transgender Health and member of the editorial boards for the International Journal of Transgenderism and the PRN Notebook. Other contributions include being a consultant for the World Health Organization/PAHO on transgender health issues and the co-chair of the WHO/PAHO HIV/STI technical advisory committee. Dr. Radix is the site-PI/co-investigator for 3 NIH/NIMH studies, including a demonstration project on PrEP.

Ramón Ramirez

Pronouns:

Ramón Ramirez has been working with the community for over 25 years in San Francisco and Los Angeles. Ramón has worked with many communities such as: monolingual Spanish speaking, LGBTQI, African American, Transgender, homeless, drug user and other. With a long experience as an HIV testing and prevention counselor, clinical health educator, entertainer and activist in the community, Ramón has been able to experience firsthand the disparities these communities experience from both sides of the spectrum. Ramón works for a large medical provider company as a Clinical Health Educator helping patients by providing education on safer sex, PrEP, weight management, diabetes diagnosis and healthy habits among other topics. Ramón wants to bring to the table experience living as a gay Mexican American and active community member.

Dane Rivas-Koehl, MS

Pronouns: He, him, his

Dane is a Graduate Research Assistant at the University of Illinois Urbana-Champaign. He is passionate about supporting LGBTQ+ families' and individuals' mental health and doing research at the intersections of race, gender, sexuality, and SES. He approaches his research from a feminist and queer-informed framework, which allows him to center queer perspectives and challenge dominant narratives.

Dane has been married to his husband, Matthew, since 2018, and they have two dogs, Jayce and Louis. Outside work, Dane and his partner love traveling, exploring new food, and spending time with family and friends. Dane joined the PAC in January of 2024.

PRIDEnet Ambassadors

Nikki Alexander-Tumblin

Pronouns: She/Her

Nikki Alexander-Tumblin, Founder and Visionary of New Orleans Black Pride, is a dynamic force in the world of LGBTQ+ advocacy. With unwavering dedication, she has carved an inspiring path as a Black Queer woman in a male-dominated society, leading a movement that celebrates diversity, equality, and resilience.

Nikki's journey is a testament to her boundless passion for social justice. Her leadership has not only birthed an inclusive haven for the LGBTQ+ community but also serves as a symbol of strength for those facing adversity. Her profound commitment to intersectionality ensures that no voice is left unheard.

A visionary with an indomitable spirit, Nikki has propelled New Orleans Black Pride to greater heights year after year. Her ability to create safe spaces and foster connections has empowered countless individuals to stand proudly in their identities. With a heart full of empathy and a mind brimming with innovation, Nikki continues to break barriers and shatter stereotypes.

Through her tireless efforts, Nikki Alexander-Tumblin has not only brought joy, acceptance, and empowerment to her community but also ignited a beacon of hope for the LGBTQ+ movement. Her legacy as a trailblazer, advocate, and change-maker inspires us all to strive for a more inclusive and accepting world.

Rio Antone

Pronouns: Universal pronouns. Most popularly used is She/Her, He/Him and They/Them.

DelRio ‘Rio Antone’ Perkins is a Non-Binary Entertainer and Gender diverse specialist with over a decade plus of professional expertise. Acting as both an LGBTQ+ activist and Human rights advocate, Rio has made history after being crowned the first ever MX Las Vegas Trans Pride title holder and first recipient of the MGM Enterprise ‘Spirit of the Lion Award’. Rio is the founder of the media entertainment brand Ladyboy Diaries, Inc. which place focus on dismantling bias societal norms and uplifting disenfranchised voices utilizing various artistic outlets.

Donald M. Bell

Pronouns: he, him, his

Donald M. Bell identifies as a 72 year old single, cisgender, pro feminist, gay or SGL (Same Gender Loving) man of African, Indigenous, and Scots-Irish roots. Don is a third-generation native-born Chicagoan, Southsider, and lifelong White Sox fan.

He is a retired professional in Higher Education Administration/Student Affairs; certified in HIV/AIDS counseling, health education, and outreach; and IDCFS Social Worker. Now at the end of a long hiatus he plans to re-enter the work field in the area of Diversity, Equity, and Inclusion. He has become a recognized resource in the area of aging, in general, and LGBT+ aging in particular. He often presents on those and related intersectional social justice issues.

Continuing his lifelong dedication to advocacy and activism, he assumes a leadership role in several social justice organizations. He is a founding member of the National Leadership Council of the National Organization for Men Against Sexism (NOMAS), the nation's oldest pro feminist men's organization. He is a member of the Board of Directors of The Village Chicago, the largest urban village in the national Village-to-Village Aging Network. He also sits on the Boards of the Jane Addams Senior Caucus and One Roof Chicago, the developers of a proposed intergenerational LGBT-riendly residence for the South Side of Chicago. And finally, he is the nominee of AARP Illinois to Governor JB Pritzker to sit on the newly established Illinois State Commission on LGBTQ+ Aging.

Don is a resident of Town Hall Apartments, Chicago's first and the nation's fourth LGBT-friendly senior residence. And in his spare time, he continues to be the proud father of two adult sons, and seven grandchildren. Life is full!

Liat Feller

Pronouns: she/they

Liat Feller (she/they) is a Jewish, disabled, queer, and intersex woman with experiences across early childhood, healthcare, and LGBTQIA+ settings. She was born and raised in southern Connecticut and is excited to bring loves of research, education, and queer community to her work at PRIDEnet. A special educator by trade, Liat advises schools, businesses, and religious organizations in the areas of accessibility and LGBTQIA+ inclusion. She is also a board member at large for a national intersex support group. Having experienced chronic illness, Liat is also passionate about achieving intersex inclusive, weight-neutral, gender-affirming care in medical settings. Liat envisions a future for LGBTQIA+ individuals which includes bodily autonomy, representation, and dignity in all areas of life and beyond denominational divides. In her spare time, she enjoys reading memoirs and going for a swim. The ways to her heart include rainbows, sparkles, a cute cat, or a good bowl of vegetarian pho.

Ederick E. Johnson

Pronouns: He/Him/His

Ederick E. Johnson a noted HIV/AIDS and LGBTQ Activist, Minister, Psalmist, Musician, Workshop clinician, and speaker is a native of Bradenton, Fl. In 2011, he relocated to South Florida to attend the only HBCU in the area, Florida Memorial University. In his years of service, he has been bestowed many honors and awards including Ujima Advocate Award as well as a Proclamation from the County and City of Ft. Lauderdale, declaring May 16th as Ederick E. Johnson Day. Currently he is employed as an Research Associate with Yale University School of Nursing. Ederick has over 12 years of experience working in the field of HIV. Prior to going to Yale, he served as the MSM (Men who Sleep with Men) Coordinator for the Florida Department of Health of Broward County. There he implemented numerous outreach programs and events that targeted the MSM population as it relates to HIV Prevention and PrEP. He Served as Government Co Chair for the MSM and Transgender Advisory Council for the County. He also sat on the Board for the Broward County HIV Planning Council. In the community he serves as Worshipful Master of New Era Masonic Lodge No. 69 Prince Hall (National Compact) Grand Chaplin for the Most Worshipful Meridian Prince Hall Grand Lodge of Fl. Member of Abraham Chapter of the Royal Arch Masons, and Heroines of Jericho, member of Phi Beta Sigma Fraternity, member of Liberty Elks Lodge, Minister of Music for Grays Temple CME, and proud store associate for WAWA store #5232.

Rosaia Shepard

Pronouns: she, her, hers

Rosaia Shepard grew up in Seattle’s Colored District, where, as a student activist in the 1960s, she fought racism, sexism, sexual abuse, as well as sexual orientation discrimination. Over the decades, ableism and ageism were added to the list. Rosaia has held many management, advising, and consulting positions for various enterprises including the Internal Revenue Service, the University of Washington, and Deloitte. Recently retired in Metro Atlanta, she writes nonfiction and volunteers her time supporting Georgia political candidates who advance LGBTQIAP rights. Rosaia holds a B.A. in African American Studies and Literature from the University of Washington and an MBA from the University of Arizona.

Paul Vila

Pronouns: he, him, his, él

Paul Vila is a freelance web developer and writer. He attended New College of Florida, where he graduated with a BA in Political Science and Environmental Studies. His academic work has focused on marrying scientific literacy and in-depth understandings of sociopolitical structures with the goal of disassembling systemic injustices. With that in mind, much of his current activist work centers on outreach for LGBTQ+ health issues, with an emphasis on Latinx communities.

SaVanna Wanzer

Pronouns: she, her, hers

SaVanna Wanzer has been a DC Trans advocate, HIV educator, and community volunteer for more than 25 years. As the founder of Capital Trans Pride in 2007, she later started May Is? All About Trans in 2018, a series of events celebrating, featuring, and loving transgender people. Designed to educate and build bridges across all communities, SaVanna has grown her vision to include organizations and individuals from across the country. During her many years of service, SaVanna was the first transgender woman to serve on the boards of Whitman-Walker Health and the Capital Pride Alliance. She has also served on the DC Mayor’s LGBTQ Advisory Committee, and started and maintained multiple peer mentoring programs. An active CAP member for NMAC & DCCFAR. Among her many awards, 2019 she was one of Leon Harris’ NBC 4 Heroes and TAGG Magazine, she was recognized with DC’s Black Pride Unsung Hero Award in 2017, Whitman-Walker Legal’s Robert Fenner Urquhart Memorial Award in 2015, and Capital Pride’s Hero Award in 2008. Retired from the federal government, SaVanna remains very active in her community and at Westminster Presbyterian Church in DC. Her future goal to take May Is? “All About Trans” National level.

Jeffery Worthington

Pronouns:

Jeffrey Worthington, known under his moniker "Jaycee Dubyuh", is the founder of the Gaymer Allied People of Color. This movement has one simple mission: to build, house, and protect black and brown queer bodies as they intersect with normative spaces in technology and fandom. Coupled with his decade of experience as a tournament and esports organizer, Jaycee continues to spread awareness of his brand and consult with those in need of guidance through the esports community. As PRIDEnet becomes the latest addition, Jaycee extends a resume of being featured in interviews and panel discussions from several organizations and educational institutions. He looks forward to creating new avenues that will conjoin PRIDEnet with a unique gaming perspective that minorities will be certain to enjoy and learn from.

Lilli Xiang

Pronouns: she/they

Lilli Xiang is a 21 year old, biracial, queer, neurodivergent undergraduate student from Texas. Currently, they are pursuing a BS in Psychology and a BS in Integrative Studies with areas in Criminal Justice, LGBTQ+ Studies, and Women and Gender Studies at the University of North Texas. An inaugural graduate of the first Early College High School in their home district, their experiences helped them realize a passion for integrating research and education with youth activism. Lilli focuses on fostering connection and belonging among residents and presents across the state and nation on topics affecting the well-being of diverse college student populations, having won awards in both fields.

Lilli strives to advocate for student perspectives in the professional world. Serving in multiple leadership roles on and off campus, their activism centers student voices at the higher education level in departmental policy adjustments, equitable representation, and program creation designed to meet the needs of every student. Through a national mentoring program, Lilli has advised underrepresented high school seniors across the United States. As they finish undergraduate studies, they look forward to new experiences, furthering their education and community involvement as a lifelong learner.