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Long Covid Patient Leadership Advancement Network (LC-PLAN)

With the support of the Chan-Zuckerburg Initiative, Solve M.E. will form the LC-PLAN, a groundbreaking program that invests in the development of LC community leaders by creating a patient-focused training program designed to prepare a network of patients and caregivers for advisory research roles and enhance patient engagement in LC research.

The LC-PLAN leadership committee of patients and experts will develop, monitor and make recommendations for the improvement and refinement of the training program. The program will ultimately create a network of empowered patient-advocates, a targeted research agenda, and a researcher guide for working with LC patients. These critical tools will provide urgently needed guidance on achieving patient-centered research in the Long Covid research realm.

Goals

  • Develop a LC patient-centered, open source training program
  • Train 135 participants through the program
  • Maintain a network and connect graduates with advisory opportunities
  • Develop and disseminate patient-preferred resources and materials for integration into the LC research agenda

LC-PLAN Curriculum Oversight Committee

Cynthia Adinig developed Long Covid in March 2020 and her unique Long Covid symptoms led her to seek care at local emergency rooms over 30 times and hospitalized for starvation multiple times as well. Cynthia decided to become a Long Covid advocate with the goal of sharing the knowledge that’s aided in her recovery journey. Much of this knowledge was from other patient advocates, and she is well known in the advocacy space for helping patients one-on-one in their recovery journeys. From pointing patients to resources for job accommodations and financial resources, to helping kick start their journey in patient advocacy in research, legislation, or media. Prior to developing Long Covid she spent the last several years working as a marketing specialist with minority and woman led nonprofits and on political campaigns. She has now worked to help guide legislative language for the Covid 19 Long Haulers Act and advised on multiple other pieces of long Covid legislation. She has written many guides for medical care for patients, including an ER guide for patients of color. Additionally, she co-founded BIPOC Equity Agency, a multidisciplinary agency led by long Covid patients of color. She has also worked with over a dozen research teams to advise on disability access, socioeconomic hurdles of a wide variety of patients and more. Cynthia is proud to become part of the LC-PLAN COC and help cultivate training for patients in the Long Covid community to become confident and experienced advocates.

 

Karyn Bishof is a first-wave Long-Hauler, infected in March of 2020. She is the founder and president of the COVID-19 Longhauler Advocacy Project (C-19LAP), a 501(c)(3) non profit dedicated to advancing the understanding of Long COVID and its associated conditions as well as expediting assistance and solutions to Longhaulers and their families through advocacy, education, research and support. Karyn holds a Bachelors of Science in Exercise Science and Health Promotion, is a single mom, and former firefighter/ paramedic, teacher and coach now disabled by Long COVID and its associated conditions (LCAC). Karyn, through C-19LAP, is a co-founder of the Long COVID Alliance and member of its executive committee, helped co-draft the Treat Long COVID Act, serves on the NIH’S RECOVER Initiatives Ancillary Studies Oversight Committee, serves on the advisory board of the Long COVID Research Fund, received the Amelia Moore Sparkle Award for Compassionate Advocacy from Dysautonomia International, and has been featured in/on NBC, ABC, PBS, NPR, CNN, NYT, USA Today, business Insider, The guardian, Politico and is a contributing author to the Long COVID Survival guide.

Liza Fisher, MBA RTY200, a national healthcare advocate and yoga teacher committed to providing education around Long Covid & LCAC. In the wellness space, she specializes in a multi-experiential approach to embodiment and repair for those whom have experienced erasure, ableism and exclusion within the yoga world and beyond. After being hospitalized for months, resulting in being disabled by Long Covid & LCAC, her eyes were opened to the world of under acknowledged and researched complex chronic illnesses effecting millions. This led to involvement in advocacy, research and policy. Liza has, co- authored research manuscripts, been a patient representative for NIH’s RECOVER & UofSC’s Covid Patient Engagement Studio and testified before Congress. She serves on the Long Covid Alliance’s Executive Committee, the Board of Long Covid Families, the Covid Health & Safety Taskforce and Vice President of Covid Survivors of Texas.

Dr. Brandy Jenner (she/they) holds a PhD in Education from the University of California, Irvine. Brandy’s work focuses on pedagogy and curriculum in adult and higher education and she has worked at UCI, the U.S. Army War College, the University of Baltimore, and currently, at the University of California, Los Angeles. In addition to working in pedagogy and instructional design, Brandy has also taught courses in education and research methods, and engaged in educational research that has been published in national and international peer- reviewed journals. Creating well-aligned training and education experiences is one of Brandy’s passions, and they are excited to bring their expertise to the LC-PLAN.

Lisa O’Brien is the founder of the Utah COVID-19 Long Haulers group and as a Long Covid patient herself, advocates for those dealing with the long-term effects of COVID- 19. Her group serves as a place for other Utahns to find resources for their prolonged COVID recoveries & receive support from other COVID Long Haulers living throughout Utah and its surrounding areas. Her group influenced the establishment of Post-COVID Care clinics in Utah and various research efforts. She has participated in over 100 local and national media interviews and has spoken at several health-related conferences on the topic of Long COVID to educate & create understanding around the long-term impacts of COVID-19. Lisa works as a Performance Auditor within the Federal Sector and holds three master’s degrees from Western Governors University: one in accounting, another in management & leadership, and an MBA.

Netia A. McCray is the Executive Director of a Boston-based nonprofit organization whose work focuses on making STEM (Science Tech Engineering Mathematics) education accessible to learners of all ages and backgrounds based on her MIT training. In March 2020, she contracted COVID-19 and never recovered. Since, she has channeled her experience with Long Covid into national advocacy efforts. Both as an independent advocate and as the Education Director of the COVID-19 Longhauler Advocacy Project (C-19 LAP), Netia has spoken extensively at public events and with the media. Netia has also worked with members of the U.S. Congress, including Rep. Ayanna Pressley (D-MA), the author of the Targeting Resources for Equitable Access to Treatment for Long COVID Act (TREAT Long Covid Act), in order to provide resources to those suffering from COVID-19 and its associated conditions. Her focus is on making knowledge regarding post-infectious disease and chronic illness accessible to all, including Black and Brown communities, which have been disproportionately affected by COVID and yet remain underrepresented in Long Covid organizations and efforts.

Lisa McCorkell is the co-founder of the Patient-Led Research Collaborative, a group of Long COVID patients conducting research on Long COVID and advocating for better policies for disabled people. She has co-authored several research studies on Long COVID and has worked on scorecards that evaluate meaningful engagement of patients in the research process. She has a masters in public policy and a background in social safety net policy and labor and employment issues, and was featured as one of Nature’s 10 people who shaped science in 2022.

M (Marcy) Miller is an Educational and Patient Experience Consultant at Solve ME/CS. She is an alumna of Boston University and received her teaching certificate and master’s degree in Educational Psychology from the University of Washington. M feels fortunate to have robust experience in education from direct teaching and training, to working in educational research, and serving as a senior policy associate for an educational advocacy organization in Washington DC. In addition to her educational experience, M has led customer experience teams, including one serving over 45,000 home care aides in Washington state. As part of her consulting practice over the last eight years, she has helped organizations design, deliver, and evaluate training programs for research studies focused on underserved populations. M enjoys her work and also enjoys biking, electric or otherwise, with her husband, two young sons, and foster daughter in Seattle, WA.

Dr. Kit Myers (they/them) holds a PhD in Sociology and Gender Studies from the University of Southern California. As a person living with lifelong chronic illnesses, Kit was drawn to the field of Medical Sociology and the study of medicine as a social process. While their academic research agenda focuses on the intersections of medicine with gender, sexuality, and reproduction, this area of research has also drawn Kit into advocacy and educational work outside of academia. This ranges from their work fighting for greater inclusion of transgender people with Sociologist for Trans Justice to developing and leading workshops to help fitness professionals provide genuinely size, body, and ability inclusive classes and training. Kit is looking forward to bringing their experience as a patient, researcher, and educator together to help develop LC-PLAN!

Allison Ramiller has nearly 10 years of experience in public health, research, and overseeing strategic initiatives and programs in the public and non-profit sectors. She is a passionate advocate of patient/caregiver empowerment and committed to amplifying substantive contributions patients and families can make to research and policy. Allison is currently a Prize Designer at XPrize, a non-profit org that designs and facilitates incentivized competitions to develop technology and innovation for the benefit of humanity. Previously, she was Director of Research Programs at Solve M.E. where she led research programs with an emphasis on generating and utilizing data to accelerate research into causes and treatments of chronic, post-infectious illnesses. Allison is a volunteer advocate for the Ovarian Cancer Research Alliance and a CDC Foundation Empowered Health Ambassador. She received a Master of Public Health degree from UC Berkeley and a Bachelor of Science in Psychology, with minors in Neuroscience and Sociology, from UC Davis.

Elle Seibert is the Research Project Manager at Meta Reality Labs, where she oversees UX research with niche populations through community engagement. Since joining Meta, Elle has partnered with recruiters, program managers and researchers to build and maintain participant panels, with a particular focus on accessibility. Elle has worked with research groups at Columbia, University of Southern California, Stanford, Occidental College… and Solve ME! During her time at Solve, Elle worked alongside the research team to launch the You + ME Registry and support the community’s growth. Currently, she serves as a Patient Representative for the NIH RECOVER Study. In her personal time, Elle enjoys reading, taking photos of street art and engaging with the broader ME/CFS and Long-COVID communities through social media. In doing so, she has come to recognize post-viral illness as a social-scientific issue, rather than a purely medical phenomenon. In other words, culture matters!

Letícia Soares is a Brazilian scientist and disability activist with a Masters in Ecology and a PhD in Biology. Her scientific background is in ecology, evolution and epidemiology of infectious diseases and she has developed and published research focusing on human and wildlife diseases. She also has extensive training and experience in Biology education. She is a person living with Long COVID and currently co-leads the COVID-19 reinfections research team at Patient-Led Research Collaborative.

Solve Staff Representatives

Allison Kanas brings over 20 years of research administration experience from the academic research environment from UCLA, UC Irvine and Columbia University, Mailman School of Public Health where she was the Director of Strategic Initiatives & Planning for the Center for Infection & Immunity and most recently the Director of Community Outreach & Engagement for the NIH ME/CFS Research Network with RTI International. She developed and implemented the outreach and engagement initiative for this research network and brings her experience working with the ME/CFS community, along with the researcher and sponsor perspective to her community engagement work. She is passionate about contributing to the advancement of ME/CFS and Long-COVID research and believes that meaningful patient engagement is critical to achieving that goal.

Amanda Martin holds a master’s degree in Health Services Administration from the University of Michigan and two bachelor’s degrees in Political Science and Global Studies from Arizona State University. She has experience in policy analysis, hospital administration, and exercise science. Prior to joining Solve M.E., Amanda owned a small business in health behavior consulting. In her role as Engagement Manager, Amanda works as a critical project manager, advocate, event producer, and community relations contact. She collaborates closely with community and patient leaders, leading scientists, and members of Solve M.E.’s Lived Experience Taskforce.

Emily Taylor brings to the organization over fifteen years of policy, organization, and advocacy experience in both the non-profit and government sectors. With five years’ experience on Capitol Hill, Emily contributes a keen understanding of both state and federal policy processes while cultivating strong grassroots organization and patient representation.
Prior to joining the Solve M.E., Emily served as the director of policy and advocacy for an award- winning autism organization. There she spearheaded major overhauls in disability, early intervention, and education policies. She is also a veteran of several successful electoral campaigns, where she trained others in effective social media and online organization. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University. Emily draws inspiration from her mother who has battled ME/CFS as well as chronic autoimmune and thyroid conditions since 1999.

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