The objective of the Virtual Advisory Team is to empower research participants to provide input on how research projects at the Scripps Research Digital Trials Center are conducted. Team members attend regular meetings and provide candid feedback on all aspects of projects to ensure that the research is accessible, relevant and meaningful to members of diverse communities and addresses their most pressing health questions.
We currently welcome applications for the 2024-2025 Digital Trials Center Virtual Advisory Team.
Hi, I am Dr. Lottie K. Barnes. I am representing the Community Health Coalition in Durham, NC. I joined the team because I am a strong advocate for person of color groups in regard to their interactions with the medical field, research and society that affects their achievement to optimal health. On a personal note, I have been living with diagnosed multiple sclerosis for 10 years and would love to have positive impact on the research of the disease causality, help achieve a better fit on correct treatment plan for each individual and hopefully a cure.
My name is Phyllis Bass and I live in Cypress, TX. I was diagnosed with Juvenile Rheumatoid Arthritis at age 5 and am an advocate for others living with the disease and patient rights. I serve on the 2020 Board of Advisors with PatientsLikeMe, as well as the Technical Experts Panel of the Core Orthopedics Outcome Measures Team through Yale University. I have a B.S. Degree in Business with a minor in Human Resource Management, M.S. in Management and Leadership and am currently completing my MBA capstone project. I am proud to be a member of the Virtual Advisory Team and look forward to working with everyone.
I’m a Family Elder, Shaman, Healer, Artist, and Mentor that has grown up in the computer and internet industry. I live in the greater New Orleans area where we have created an all LGBT blended family. We are a sanctuary of acceptance, free from discrimination.
I have a medical history of Severe Degenerative Disc Disease, Fibromyalgia, and Epilepsy. I am a strong patient advocate and have spoken at symposiums, participated in video conferencing online discussions, and created video testimonials.
I have a long history of civil rights and LGBT activism. I am an active mentor for at-risk gay youth and have worked with the courts to help those youths get into safer environments.
As a Shaman, I work through meditation and spirit to seek balance in the world around me for myself, my family, and friends.
I am native Houstonian, the oldest of four children born to Nora Lee Jones-Hailey and Ambrose Carper, Sr. I have two sisters (Barbara Cole & Shon Cooper) and a brother (Ambrose Carper, Jr., now deceased). I love line dancing, bike riding and continuing to learn to play the piano; and, of course sleep (smile).
I am an aunt and great aunt who loves all her babies. They all call me “Aunt Nunna”.
As a disciple of the Greater First Baptist Church (Pastor Rev. Rory L. Thompson Sr.) I serve as our Resource Ministry Team lead, Assistant Financial Secretary and Administrator to the District church denominational Congress President. I coordinate health fairs, job fairs, scholarship walks and work with other community outreach activities such as our food pantry distribution in partnership with the Houston Food Bank.
As a HOPE facilitator, I coordinate the HOPE line dance activities during the health fairs; facilitate all levels of the HOPE training curriculum in the Texas area and serve as an All of Us Virtual Advisory Team (VAT) member. “Fit for Service” H.O.P.E. Seasoned Saints Ministry Coordinator, working as encourager for those over 50 years of age to remain spiritually, physically and emotionally fit as we age and support the special needs that may arise.
As a student at Walden University, I’m working on Chapter 3 of my dissertation and my goal is to graduate by December 2020/January 2021.
Sandra Cooper is Executive Director of the Greater Houston Region oversees all aspects of activities in the local AHEC center; supervising staff; monitoring project direction; analyzing project data; integrating activities; administering grant funds; developing project activity and evaluation reports.
Sandra is experienced in public speaking, workshops and facilitation; promotion of health careers to middle and high school students; development of mentor/ shadowing programs and is knowledgeable in cultural competency principles.
An advocate for healthy living, Sandra promotes the evidence-based lifestyle Houston Diabetes Prevention Program (NDPP) initiative to address type 2 diabetes Prevention. She oversees the Dept. of State Health Services –Tobacco Prevention and Control Coalition which supports policies and practices on tobacco cessation programs. She also partners with the UT School of Nursing and Neighborhood Centers, Inc. to provide senior wellness programming.
Sandra received an MBA from University of Texas at Tyler and is a certified Community Health Worker Instructor.
I am currently a student at Brown University concentrating in public health. I’m passionate about health equity, youth-driven advocacy, and community engagement. In particular, I’m interested in ways to improve accessibility in healthcare—whether it be through structural changes, improvements in health literacy, and physician-patient communication.
My past experiences in community engagement include collaborating with students with disabilities to improve campus accessibility and working with community-members who are formerly incarcerated to develop health education tools.
I hope to go into the medical field and continue to make change!
I’m a physician, medical research apprentice, advocate, health promoter and global citizen. I graduated from the Universidad Autónoma de Baja California (UABC), Faculty of Medicine in Tijuana, Mexico; where I was born and raised. Since I was medical student, I envisioned becoming a bi-national medical researcher. I strived to expand my skills in evidence-based medicine and public health education to benefit the needs of disadvantage groups-refugees, farm workers migrants, Mexico’s indigenous populations settling on both sides of the border, as well as the Latino communities in the United States. I joined the VIIDAI program when I was in medical school; an integrated clinical and bi-national collaboration between Universidad Autónoma de Baja California (UABC) Faculty of Medicine, San Diego State University (SDSU), and the University of California San Diego (UCSD) School of Medicine. Working as an interdisciplinary team, faculty and students participated in public health projects, providing medical services and health promotion to farm workers and their families in San Quintin, Mexico, a municipality with a high migratory flow and marginalization in Baja California.
In 2013, I was a collaborator of the Cure TB Referral Program, a service between the County of San Diego’s Tuberculosis Control Program and the CDC’s Division of Global Migration and Quarantine (DGMQ); one of the goals of this community-centered division is to reduce the spread of TB by linking patients to care outside the United States.
Years later, I faced a challenge in my personal life when my 5-year-old daughter was diagnosed with Acute Lymphoblastic Leukemia, that motivated me to causes in childhood cancer preventative care, blood, and organ donation, amongst other health initiatives. Since 2020, I’ve been a collaborator as a speaker with the American Heart Association in San Diego’s North County on diverse topics about heart health and healthy aging. I’m also a volunteer with Make-A-Wish Organization-San Diego, dedicating my time in establishing communication with Hispanic families who have children and teenagers experiencing life-threating diseases.
Presently, I’m a concurrent student at University of California San Diego-Altman Clinical and Translational Research Institute (Translational Science Certificate). I’m also furthering my education to receive a Master’s in Medical Sciences at my alma mater, conducting a study about depression in elderly adults during the Covid-19 pandemic at the primary care facilities for the open population in Tijuana, Mexico.
I’m thrilled about the innovative model of Precision Medicine and Translational Medicine. I’m looking forward to being involved in projects related to aging and neurodegenerative diseases. It is an honor and a privilege to be a member of the Virtual Advisory Team at Scripps Research Translational Institute and I appreciate the great opportunity to learn from experienced scientists and advocates from other backgrounds, as well as building a network for future projects. ¡Viva la Ciencia!
I am a single, disabled senior who lives in Colorado Spring, Colorado. I participate in a variety of Lived Experience Advisory Boards and patient advocacy projects. I have taken my 12 years of experience in the health insurance industry, and more than a decade as a patient with multiple chronic illnesses, and given a voice to patients like me, with the hope of being part of making changes that have a positive impact in my community. I have had the pleasure of serving as a member of multiple Colorado Medicaid and Department of Human Services Member Advisory Councils, completed a one-year term as a member of the Patients Like Me Team of Advisors in 2020, and have participated in advocacy and research projects with other agencies and companies throughout the United States. I am a space and science enthusiast, enjoy writing, traveling, listening to music, being with friends and family, spending time with animals, and watching birds and wildlife.
As a digital health consultant, I help to guide innovation and the transformation of homecare health through the use of digital technologies. My ability to collaborate with stakeholders, analysts, and business teams allows me to define business requirements and build capacity.
Supporting startups with value-added propositions is one of my passions. In my role as Director of Behavioral Health at envoyatHome, I work on solutions to enhance the quality of life for people living with dementia. My current work involves developing brief, cost-effective proxy measures for use in outcomes research. It is my goal to integrate these achievements in order to support quality digital monitoring systems in rural and underserved communities around the world.
Hetlena Johnson is a cheerleader for handling life’s challenges with laughter and spirited resilience. Not shy to take on the fears and pushing limits beyond the restrictions of lupus, she believes in living your best life while living with lupus. Hetlena is as a nationally recognized author, international speaker, and professional trainer devoted to helping others face the trials of life with an open mind. Positive energy has allowed her to present at several conferences around the country including TEDxDenverED. As the former Chief Volunteer Officer for LFA South Carolina Community Partner, she played a key role in connecting local lupus community efforts with the National Lupus Foundation of America, Inc. With a certification as a National School Reform Faculty Critical Friends Group Coach, she wrote the first lupus/medical nightmares protocol. Living and thriving with lupus for the past 25 years, Hetlena continues to provide strong leadership in facilitating lupus support groups. Her 18 years of experience in education has allowed her to coordinate strategies, design solutions, and provide consultations to national health coordinators, medical community members, and lupus education leadership for peer group activities. Hetlena decided to keep a personal diary of her confusion, fear, and challenges associated with being diagnosed with Lupus. She shares many of her trials and most tender moments of peace in her book, “Diary of a MAD Lupus Patient.” In her words, “I’ve had the opportunity to work full-time traveling the United States to deliver trainings. While living with Lupus! I am blessed!” You can follow Hetlena Johnson on social media platforms using the handle, @TheLupusLiar. She is honored to join team members of the All of Us Research Program to help provide a voice for patients.
Christopher K. Lee is a healthcare strategy and innovation professional. Having worked with stakeholders across the healthcare continuum—from solo physicians to integrated health systems, retail pharmacies to managed care plans—he understands the challenges and priorities of various groups and is able to deliver scalable, win-win solutions.
Chris currently serves as a senior manager at UCLA Health. In addition, he writes a career development blog at PurposeRedeemed.com and often speaks at colleges and professional associations. He has been quoted in outlets such as Forbes, U.S. News & World Report, Medscape, and Becker’s Hospital Review.
Dr. Lilley Leong has about 35 years of academic and industry research and development (R&D) experience in hematology and vascular biology. She became interested in human disease when she learned about hemophilia in a 7th grade science class, and her work in hemophilia culminated in helping to commercialize a modified FVIII (JIVI) for hemophilia in 2018. As an R&D scientist, she had the privilege of collaborating with many eminent researchers at a variety of research institutes including the University of Vermont and the Scripps Research Institute.
Dr. Leong came to clinical research and digital clinical trials through her drug discovery work at Bayer Healthcare, where she worked with clinical development colleagues navigating the paradigm shift in clinical monitoring of modified FVIII products through clinical trials and pre commercialization.
She took part in Bayer’s early digital efforts by participating in an innovation project assessing the feasibility of wearables to detect sickle cell disease vaso-occlusive crisis.
These experiences prompted her to pursue a master’s degree in clinical research management (CRM), where she learned about the under-representation of women and minorities in clinical trials.
Dr. Leong continues to support digital clinical trials by volunteering as a study participant in the Scripps Research Digital Trial Center’s DETECT and REFRESH trials, and by working as an AI trainer, testing AI software. She is looking forward to further supporting digital trial efforts as a member of the Virtual Advisory Team.
Dr. Bibiana Mancera earned her bachelor’s degree in 1996, her Master’s in Education in 2006, and her PhD in Interdisciplinary Health Sciences from the University of Texas at El Paso (UTEP) in 2016. She is currently a Research Assistant Professor in the College of Health Sciences and Leader of the Community Engagement Core for the National Institutes of Health funded U54 Border Biomedical Research Center (BBRC) at UTEP. The BBRC is supported by the Research Centers in Minority Institutions Program (RCMI). As the Community Engagement Core Leader, Dr. Mancera works to form interdisciplinary and inter-professional research teams for the creation of strategic partnerships between researchers and community stakeholders to facilitate research, particularly the collection of bio-specimens, to expand the UTEP bio-repository. She has been involved with the All of Us Research Program through the National Alliance for Hispanic Health for three years and is also an All of Us partner. Dr. Mancera is a native-born El Pasoan of Mexican origin and has strong ties to the community.
Her research interest includes: health disparities and inequities among underserved populations, particularly Hispanics of Mexican origin; barriers and facilitators to healthcare; barriers and facilitators to participating in biomedical research, risk and protective factors for intimate partner violence among men and women of Mexican origin; translational science; community based participatory research; and utilizing promotores (community health worker) models to promote community engagement, recruitment, and retention in research studies among underserved populations.
On a personal level, she is married to Ray Mancera, who is also actively involved in the El Paso community and together they have two children, Marcos and Isabella. Dr. Mancera is a member and Vice-President of her council (4875) of the League of Latin American Citizens (LULAC) the oldest Hispanic/Latino civil rights organization in the United States. She has also been a music minister at St. Pius X Catholic Community for over 30 years.
Estela Mata-Carcamo has been working in the healthcare industry for over 28 years, she currently works in IT implementing and supporting Electronic Health Records system for one of the nation’s leading independent medical groups. She is also the President and co-founder of Looms for Lupus, a nonprofit organization that provides support to those living with Lupus, overlapping conditions, their caregivers and loved ones.
Living with a chronic illness is life changing not only for the individual but also for their loved ones and caregivers. Estela lives with Fibromyalgia and is also a caregiver. Estela alongside her sister Juana have been providing support via in person and virtual support groups in English and Spanish to those living with Lupus, Fibromyalgia and other overlapping conditions via, workshops, social media, and symposiums. They share their stories to empower individuals to be part of their care team, learn about their illness, treatments, clinical trials and connecting with others.
Estela raises awareness, advocates at the local and state level and works with many local and national organizations providing support to the community. Estela is a member of the Lupus Multicultural Task force for Lupus Research Alliance, Member of the Lupus Patient Advisory Council members for Lupus LA, active participant in the 32nd District Mental Health Consortium led by Congresswoman Napolitano, is a board member for Lupus and Allied Diseases Association, Inc., a Strategic Advisor with Rare Empathy and steering committee member for Creating Patient Access Task, LLC.
Estela has a bachelor’s degree in business management with an emphasis in IT. She lives in Baldwin Park, CA with her husband and two daughters.
Juana Mata was born in Mexico and migrated to the United States at the age of 10 yrs. She is the oldest of seven siblings. She resides with her husband and youngest of her two sons. She is also the proud grandmother of two grandchildren. Juana is a Children Social Worker for the Department of Children and Family Services and has been working for DCFS for the past 26 years. Juana works with children and their families to assist and guide them with an ultimate goal to ensure the children’s safety and wellbeing while strengthening the families.
Juana is the CFO of Looms for Lupus, a nonprofit organization that she founded alongside her sisters to provide to support to those living with Lupus, caregivers and their loved ones. Juana was diagnosed with SLE Lupus and Rheumatoid Arthritis in 2009 and she has been dedicated to raising awareness, empowering others to practice self-advocacy and advocating for lupus survivors with local, state and national government officials. For the past 3 years she has been part of the advocacy/lobbying efforts in Washington DC where she has shared her story with legislators and highlighting the importance of federal support for lupus and fibromyalgia research.
Juana has been working with local and national organizations to increase Lupus Awareness by sharing her story, empowering and educating others on the importance of advocacy. She was the PatientsLikeMe 2019 Advisor, Department of Defense Peer Reviewer in 2018 and 2019. She was honored as the 48th Assembly District Woman of the Year in 2018 by Assemblywoman Blanca E. Rubio in the annual event at the Capitol.
Juana is a member of the Multicultural Task Force for Lupus Research Alliance, Lupus Patient Advisory Council Member for Lupus LA, Board member of Lupus and Allied Diseases Association, Inc., Strategic Advisor for People with Empathy and is an active participant of the 32nd District Mental Health Consortium led by Congresswoman Napolitano. Juana is part of the Virtual Advisor Team for All of Us Research, Participant Advisor for Keck Medicine of USC All of Us Research Program, Ambassador Participant with All of Us Research Program.
I fell suddenly ill in the summer of 2012, at the age of 23. Constant visits to the ER over the course of three months revealed no clue as to what was going on with my body. It was only when I began having serious life-threatening symptoms such as high fevers, vomiting, swelling in her feet and legs, and blackouts, that I was finally hospitalized. After several long days of testing, and a kidney biopsy, in October of 2012, I tested positive for SLE Lupus Nephritis. From that day on, my life was never the same.
The first thing I tried to do, was find support in my community. However, I found absolutely nothing. Despite my treatment plan, lupus remained fully active, and wreaked havoc on my life for a year and a half. lupus had caused me to lose most of my hair, I carried around 40 lbs. of painful edema, or fluid, in my feet and legs, I had skin rashes everywhere, and a swollen round face from the high dosages of steroids prescribed to suppress my immune system. For the first time in my life, I was insecure, and I was alone.
In January of 2014, lupus caused me to go into acute kidney failure. After six long months of chemotherapy, I finally began walking on my path to recovery. I then decided that I never wanted anyone in my community to go through what I went through alone. In 2015, I created the organization, Making Lupus Look Good (MLLG). MLLG is dedicated to empowering women that are suffering silently with the many insecurities that the lupus battle may bring. The MLLG mission is to restore the confidence in these women that lupus has stolen from them, by providing them with a full glam experience including makeovers, wigs for hair loss, skin care, etc, and full photoshoots at no cost to the patient whatsoever. The purpose of the makeovers is to remind these women of the beauty that God has given them, despite the many insecurities that lupus may throw their way. In July of 2015, MLLG partnered with The Lupus Foundation of America DC/MD/VA Chapter, and created the first ever Lupus Awareness Event in Roanoke, Virginia, which we have continued annually ever since. In October of 2017, I became certified as a Chronic Disease Self-Management Workshop Leader, a program created by a group of researchers at Stanford University. With this, I lead workshops in the community, to help others living with Chronic Illnesses learn to better cope with and maintain control over their illnesses. In 2019, I created The Survivor’s Circle, the first lupus support group in my community in over a decade. And in 2020, I became one of thirteen people chosen across the country to be a Team Of Advisors Member for PatientsLikeMe, and I’m beyond excited to now be a part of the All Of Us Research Program, and to do my part in helping to make a change in the world. Since my lupus diagnosis, I have also been diagnosed with Pseudo Tumor Ceribri, a rare neurological condition caused by lupus, that mimics the symptoms of a brain tumor. Although I have learned to better manage my illnesses over the years, I still battle with much pain and insecurities every single day. Which is why my God given passion is to bring as much awareness as I can to lupus and invisible illnesses, and to let lupus warriors across the world know that they aren’t alone in this battle, and that I am fighting with them. It’s my purpose.
Lee Merriweather is a native Texan and has lived in Houston, TX for over 40 years. She graduated from both Texas State University and Texas Southern University. As a retired pharmacist, practicing almost 30 years, Lee spends her time volunteering and being Nana to her two grandsons. A member of Wheeler Avenue Baptist Church she teaches line dancing to senior citizens and serves in Family Connections. A member of the YMCA, she keeps connected with programs and initiatives to keep the body and mind engaged. Serving on her Local and National Pharmacy Alumni is fulfilling and keeps her updated on products and services that are provided to the community. Volunteering with AARP and serving on various committees helps her provide services and information to the senior community.
My life changed in 2004 when I was diagnosed with Parkinson’s Disease. In 2009, I left my job as a Small Business Advisor, and went on disability. In 2019, I retired, officially. I am celebrating my 16th anniversary of my Parkinson’s diagnosis. My passion is to act as a patient advocate/ambassador. I also participate in clinical trials.
In my life experiences I have volunteered with Guiding Eyes for Blind as a puppy raiser and as a CNY Area Coordinator. I now volunteer as a board member for our local County Humane Society. And, as practicing what I preach have 3 rescue cats (Tilly, Bailey, and Katie Kat), as well as to rescue dogs, Bosco (dog of questionable parentage) and Max (Belgium Malenios, bomb detection flunkie!).
My husband and I are volunteers for NY State Skills USA. We work to provide area judges and chairmen for the various competitions as well as chair the Team Works competition. We also work with local industries, suppliers, contractors, and businesses to solicit support for materials and assistance to sustain the competition.
In my working life, I have been a jack-of-all-trades-and-master-of-none! I have worked for one of the original DIY lumber big boxes starting as a part-time cashier and culminating in management. I have also worked as an Assistant Manager for a Farm Cooperative retail/wholesale operation. During the construction of the Nine Mile Nuclear Plant, I was challenged to provide administrative services for five separate and diverse companies responsible for the completion of Nine Mile II. After being downsized as the loading of the nuclear fuel was being scheduled, I traversed to manufacturing.
Starting out as a planning/production clerk, I worked my way into management, becoming the supervisor of the inks, as the company I worked for printed and formed round ice cream containers. This job held particular challenges. The printing industry is governed by environmental governmental agencies. Two weeks after being trained by the retiring supervisor, I was left to learn how to visually match colors [not like going to the local Lowes and selecting a paint color and voila go home and paint]. The EPA let us know we needed to convert to water based inks which have lower VOC’s than what inks we were using. I led the research battle and the training of some 300 employees, supervision, and upper management. I left management and became a certified small business advisor for the SBA [Small Business Administration]. This was my dream job. I taught individuals what skills they needed to open their own business. This was my passion, my commitment, my aspiration, and ambition until in 2009 I had to consider and choose between my health and safety or my passion. I chose to leave the SBDC due to my progressing Parkinson’s. I am now officially retired, advocating for Parkies and more research for PD, sharing my positivity with other Parkies, and volunteering for various health NFP’s as an advisor or just a worker bee!
Joe O’Connor was diagnosed with Parkinson’s hereafter referred to as p in 2016. He is a 2019 PLM team of advisors’ alumni. Joe has dedicated his efforts to help to help find a cure for Parkinson’s. To this date and to support the find a cure initiative Joe has participated as of this writing in 46 clinical trials for Parkinson’s. A left brain person in his professional life, Joe found through the various ways to explore his creativity and his right brain. To that end he has written a book of poems, contributed a painting to the art project “Picturing Parkinson’s” which is online repository for works of art done by PWPs and sings in a p chorus.
Karla Rush retired from community college administration to seek solutions for vision loss and other health issues attributed to idiopathic intracranial hypertension and fibromyalgia. She worked primarily in advancement and community development (1987-2010), as an adjunct instructor (2005-2018), and taught at the Arkansas Department of Corrections’ school.
While experiencing the frustrations of ‘bare bones’ health care in rural Arkansas, Karla found PatientsLikeMe, joined the network to learn from others and was selected to the PLM inaugural team of advisors in 2014. That experience further deepened her belief in education as a source of power in any situation. Karla continues to advocate for meaningful communication between patients and their health providers. In fact, she credits good relationships with medical professionals as the key to surgery/treatment to preserve her eyesight.
Karla chairs a local community college foundation board, provides technical reviews for higher education grant applications nationwide and takes on an occasional foster dog project. She is a happy grandmother to six bright grandkids who are growing up to be animal-appreciators; she and her husband of 16 years have four dogs (Adele-a foster terrier mix, Dexter-a brittany spaniel, Gabby-a shihtzu rescue, Skye-Dexter’s sister) and a quarter horse named John.
Ombudsman | Pharmacy Technician Retired | Peer Support Specialist | Human Services Management | Geriatric and Youth Advocacy Specialist | Bachelor of Arts Degree, Human Services Management, University of Phoenix | Volunteerism
I am a versatile easy going individual determined to make a difference in and everywhere a need arises. I am a college graduate with a bachelor’s degree in Human Services Management. I have 53 years of experience meeting people’s individual needs no matter the demographics and 30 years of experience in the education, leadership and advocacy for mood and dual-diagnosis disorders. I am an independent volunteer for 33 years. I’ve worked in hospitals, nursing homes and in management positions in Retail. My drive is in serving others, making sure our voices are heard.
I remember walking to and from kindergarten and crying because my knees and ankles hurt. At the age of 6, I was diagnosed with juvenile rheumatoid arthritis. Growing up with a painful, chronic disease is not easy. Hearing over and over again that you’ll need to be cared for the rest of your life, that you’ll never go to college, have a job, get married, or have your own family is an awful burden to put on a child. Feeling alone is the worst part. Not having another human being in your personal world that knows how you feel, understands how difficult even the most ordinary tasks can be, and how exhausting it all is can be the hardest thing of all.
I’m not sure how old I was when I decided I was going to ignore the doomsayers and have the life I wanted. I do know that when I was 7, I announced my intention to become a teacher. All through my school years, that was my goal. Doctors, teachers, and school administrators tried to talk me out of it. It didn’t work. I was accepted into the college of my choice and graduated with my BS in education and a teaching certificate. I got a job teaching first graders in a small private school and spent 12 incredible years living out my dream.
Unfortunately, the body you’re in doesn’t always allow you to continue doing everything you once did. So, I left the classroom and started a new career as a training coordinator for a nonprofit Independent Living council. I had no idea that I had found a new family. Every person I encountered or worked alongside knew exactly what it was like to live with a disability and a diagnosis. They taught me how to be an advocate for not just myself, but for everyone with a disability, especially those without a voice. These days, I’m no longer an employee, but have become the Chairperson of the council. I also serve on my state Rehabilitation council, and as a commissioner on the state Employment First Commission. I’m alumni of the PatientsLikeMe team of advisors and currently participate in several online studies and workgroups.
A final word to those doomsayers: I’m happily married, a homeschooling mom of 2, and living my best life. Who would’ve thought?!
Hira, an aspiring changemaker from New Jersey, is the vice president of Girls Who Code and Waksman Research Club, as well as president of her school’s Muslim Student Association. In her free time, she enjoys coding apps, playing badminton, and spending time with her family. This past summer, she carried out a research project investigating the impact of diabetes management apps on their users, which was inspired by her grandfather’s experiences. In the future, she hopes to combine her passion for computer science and biology to solve the health care challenges her community faces.
As founder and CEO of People with Empathy, Christine Von Raesfeld is a leader in bringing a critically needed patient perspective to cutting edge medical innovations. Committed to providing patients with chronic and rare diseases with the support they need, Christine works with patient advocacy organizations, industry representatives, and individual patients and their loved ones. Living with many rare and chronic diseases, she believes that in order to foster understanding and empowerment, patients must be treated as people first. As a patient involved in Stanford’s Human wide program, she speaks on the benefits and advantages of precision medicine, with a special interest in pharmacogenomics.
Christine’s drive to make lives better for patients has been nationally recognized. In 2019, she spoke on stage at the Startup Health Festival as an invited guest of Sanguine Biosciences. Christine serves as the Team of Advisors (Alumni) for PatientsLikeMe. She recently hosted a two-day Rare Disease/Orphaned Drug conference and has been nominated for four Wego Health awards this year. Christine was also named one of Silicon Valley Business Journal’s 100 Women of Influence for 2019.
On the community side, Christine currently serves as a Board member of DBSA California in addition to be an advisor to Health Advocacy Summit (HAS), More than Lupus, and Syndio Health. She also volunteers her time with RDLA and sits on the Community Congress for Everylife Foundation She is a driving force among collaboration within the healthcare community and is committed to breaking down silos in healthcare. She provides an honest patient perspective at conferences which helps companies advance their patient-centered initiatives and has contributed to several white papers and podcasts on the topic.
Christine’s conference speaking engagements, consulting efforts, and ability to share her personal experiences have allowed her to bring a much-needed change to the healthcare industry while bridging the gap between stakeholders.
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