Richie Kahn is a public health professional by training, clinical researcher by trade, and patient advocate by necessity. He is intensely passionate about incorporating patient and caregiver perspectives into the clinical development process, ultimately reducing the time it takes to bring promising new therapeutics to the patients that need them most.

Sadie Elisseou, MD is a primary care physician in the Boston VA healthcare system, a Clinical Instructor of Medicine at Harvard Medical School and Adjunct Instructor of Medicine at Boston University School of Medicine, and a nationally recognized expert in the field of trauma-informed care (TIC), an organizational framework for supporting survivors of various forms of trauma. Dr. Elisseou's award-winning curriculum on ‘trauma-informed physical examination’ is now being taught at medical schools and healthcare institutions across the country. During the pandemic Dr. Elisseou worked with VA colleagues to publish a framework for trauma-informed telehealth. Dr. Elisseou is the co-founder of the Veterans Health Association TIC Collaborative and a member of the Trauma Informed Health Care, Education and Research (TIHCHER) collaborative and the Harvard Medical School TIC Steering Committee. She enjoys building platforms for educating healthcare professionals in trauma-informed practices. You can reach her at www.sadie-elisseou.com.

The Substance Abuse and Mental Health Services Administration, or SAMHSA, has identified 6 core principles of a trauma-informed approach. #1 is Safety. #2 is Trustworthiness and Transparency. #3 is Peer Support. #4 is Collaboration and Mutuality. #5 is Empowerment, Voice, and Choice, and #6 is attending to Cultural, Historical and Gender Issues. Dr. Elisseou and others in the field are applying these principles to healthcare delivery

According to The Substance Abuse and Mental Health Services Administration, or SAMHSA, a trauma-informed organization must follow these 4 Rs: it must realize the widespread impact of trauma, recognize the signs and symptoms among clients and staff, respond by putting trauma-informed measures into practice, and resist re-traumatization. Dr. Elisseou works with healthcare organizations to incorporate these 4 Rs into daily operations

Catherine Foot is Director of Phoenix Insights, a new think tank set up to transform the way society responds to the possibilities of longer lives. Phoenix Insights is part of The Phoenix Group, the UK’s largest long-term savings and retirement business.

Catherine is a research and policy specialist in ageing and longevity, and from 2015 to 2021 was Director of Evidence at the Centre for Ageing Better, a charitable foundation funded by The National Lottery Community Fund, and part of the government’s What Works Network. Catherine has also held senior roles at the health and social care think tank The King’s Fund, and the medical research charity Cancer Research UK.

Gay has been active in the Rare Disease community for over two decades and continues her efforts to build and support patient and family advocacy.

Co-founded ADCY5.org, the foundation for ADCY5-related dyskinesia. ADCY5.org supports world-renowned researchers who study the gene and its variant. She continues to build a community of hundreds with this disease, when they started with only 1.

She is an advocate of genetic testing, shared data, and patients owning their data. Her focus remains to help all Rare Disease patients find testing and teach them how to maintain health records.

Gay successfully advocates for access in a variety of environments including, but not limited to, genetic testing ,education in classrooms, private, state, and federal insurance, as well as collaborating in the Rare Disease space to gain access to clinical trials and medical therapies.

In addition to being the keynote speaker for the Biocom Annual Dinner, she has spoken to audiences of up to 1,000 attendees about her experience of having an undiagnosed child for 15 years, getting a diagnosis through Whole Genome Sequencing, and building a community around an unknown genetic disease.

Disclaimer: Gay is speaking to us today as a parent and patient advocate and her opinions are her own. She is currently the Director of Patient Advocacy & Engagement at Neurogene Inc. and applies her life learning to help other Rare Disease families.

Links:

Gay: https://www.linkedin.com/in/gaygrossman/

Foundation: www.ADCY5.org

Lilly: www.LillyGrossman.com

https://www.linkedin.com/in/lillygrossman/

Laurie had a 25 year career in financial services and was President of Los Angeles-based fixed income software firm Capital Management Sciences (IDC Fixed Income Analytics). Diagnosed with incurable Stage IV follicular non-Hodgkin lymphoma at the age of 46 in 2006, Laurie was forced to retire to focus on her health and had 12 years of continuous cancer treatment. She had seven different lines of therapy including 3 clinical trials. In 2018, she received CAR-T in a clinical trial and finally achieved a complete remission where she remains today.

Laurie spends considerable time assisting cancer patients navigating the challenges a cancer diagnosis brings. She is a Leukemia & Lymphoma Society (LLS) First Connection volunteer reaching out to newly diagnosed and relapsed blood cancer patients to provide support. She is also an LLS Public Policy Volunteer Advocate, fighting for legislative changes to benefit cancer patients in Washington D.C. and Sacramento, CA. She is an active volunteer fundraiser for LLS and is currently raising $250,000 for LLS funded immunotherapy research grants. In combination with that, she is in training to climb to the Mount Everest Base Camp with a group of her oncologists and other patients. Unable to travel internationally as a result of her tweaked immune system, Laurie will complete the 26.2 mile D.C. Marine Corps Marathon on October 30, 2022. She welcomes any and all donations to her LLS fundraiser at www.bit.ly/CarTSupergirl - all donations will fund immunotherapy research via LLS research grants.

In order to raise awareness of the groundbreaking immunotherapy, CAR T, that finally led to her being cancer free, Laurie has written numerous articles for publication in a variety of media and enjoys public speaking opportunities.

She served on the Wells Bring Hope Board of Directors for 8 years, with the mission of bringing safe water to Niger, one of the poorest countries in the world and was also on the Board of Directors of Audit Integrity/GMI Ratings until its sale to MSCI.

Laurie was a Russian language and International Relations major at Colgate University. She resides in the Hollywood Hills in Los Angeles with her husband, Ben, and they have a son, August who graduated from college in Washington D.C. in May 2022. August was in kindergarten when Laurie was diagnosed and spent his entire elementary, middle and high school years with a mom in cancer treatment.

You can donate to her cause here:

http://pages.lls.org/tnt/calso/corps22/LAdami

Benjamin F. Miller, PsyD, is the President of Well Being Trust who oversees the implementation of the foundation’s strategies, full portfolio of investments, and partnerships. Dr. Miller’s previous role as Chief Strategy Officer of Well Being Trust ensured alignment across the foundation’s grants, research, partnerships and policy recommendations.

A clinical psychologist by training, Dr. Miller is a nationally recognized mental health and policy expert who has worked to advance mental health throughout his career. He oversees the foundation’s portfolio alignment across grantees, overall strategy and direction, and connection of the work to advance policy. Previous roles include being the founding director of the Eugene S. Farley, Jr. Health Policy Center in the Department of Family Medicine and the University of Colorado School of Medicine.

Dr. Miller is currently an Adjunct Professor in the Department of Psychiatry and Behavioral Sciences in the Stanford School of Medicine. He has published prolifically on the topic of mental health integration and public policy. He has been featured in CNN, NBC News, USA Today, NPR, PBS News Hour and many more.

Theresa Brown, RN is the author of the New York Times bestseller The Shift and Healing: When a Nurse Becomes a Patient. She has been a contributor to the New York Times, CNN.com, the American Journal of Nursing, the Journal of the American Medical Association, and the Pittsburgh Post-Gazette. She has been a guest on MSNBC Live and NPR’s Fresh Air. Her first book was Critical Care, and during what she calls her past life, she received a PhD in English from the University of Chicago. She lectures nationally and internationally on issues related to nursing, health care, and end of life.

Michelle Litchman, PhD, FNP-BC, FAANP, FADCES, FAAN is an Assistant Professor at the University of Utah College of Nursing, Adjunct Assistant Professor of Internal Medicine, and Nurse Practitioner at the Utah Diabetes and Endocrinology Center. She serves as the Medical Director of the Intensive Diabetes Education and Support Program at the University of Utah, a multidisciplinary diabetes self-management education and support program that integrates shared medical visits.

Her NIH and foundation-funded program of research is in the nexus between diabetes, digital health, and health disparities. Her research has three overarching foci: 1) the social context of diabetes management in online (peer support communities) and family (romantic partners, parents) environments, 2) technology mediated diabetes interventions to address health disparities with an emphasis on Deaf, Hispanic, and rural communities; and 3) novel methods to examine real-world diabetes self-management. Her research focused on the underground exchange (donating, trading, borrowing, and purchasing) of diabetes medications and supplies was highlighted across national media outlets, including NPR Science Friday, CNN, and The Doctors. Dr. Litchman has worked closely with legislators and national professional organizations, where her research has influenced policies and practice.

Dr. Litchman received her research doctorate and master’s degree from the University of Utah and undergraduate degree from Weber State University. Dr. Litchman is a Jonas Scholar, Betty Irene Moore Nurse Leader and Innovation Fellow, and University of Utah Presidential Societal Impact Scholar. She has been inducted as a Fellow of the American Association of Nurse Practitioners, Association of Diabetes Care and Education Specialist, and American Academy of Nursing.

Danny van Leeuwen, Opa, MPH, RN, a two-legged cis-gender, old white man of privilege, wears many hats in healthcare. He’s known as Health Hats – an action catalyst, patient-caregiver activist, a person with disabilities from Multiple Sclerosis, care partner to several family members’ end-of-life journeys, a registered nurse for over 45 years, informaticist, and podcaster (https://www.health-hats.com/pod). Danny serves widely as a technical expert. For example, he is a National Quality Forum Patient and Caregiver Engagement advisor and serves as a member of their Standing Committee for Cost and Efficiency Measures. Danny is a member of the PCORI (Patient-Centered Outcomes Research Institute) Board of Governors. He previously served as the Vice President for Quality Management at Advocates, Inc., providing support services to individuals and families with mental illness and developmental disabilities, among other challenges, and led Boston Children's Hospital's Patient-Family Experience Initiative. He plays baritone saxophone in a Latin Band.

Tristan Bilash (he/him/human) is a clinical oncology social worker, writer, speaker, Stage 3C ovarian cancer survivor, ADHD thriver, transgender man, and inclusive health advocate. Tristan has presented at numerous provincial and national conferences in Canada, including being a keynote speaker for the Canadian Association of Psychosocial Oncology (CAPO) 2020 National Conference.

As a transgender health advocate, Tristan is a national 2SLGBTQIA+ representative for the Canadian Association of Psychosocial Oncology Advocacy Committee. He is currently collaborating with the World Ovarian Cancer Coalition on their upcoming No Person Left Behind campaign to improve awareness and care for 2SLGBTQIA+ folks diagnosed with ovarian cancer.

Tristan’s story is featured in the journal article, “Spare Parts: Navigating Ovarian Cancer As A Transgender Man” which Tristan co-authored with his friend and colleague, Dr. Lauren Walker (University of Calgary, Tom Baker Cancer Centre). “Spare Parts” was recently published in the Journal of Clinical Oncology (Volume 40, Issue 9) and remains free-to-access.

Tristan was recently invited to write a column for the Society of Gynecologic Oncology. “When The Software Says You Don’t Exist: Creating Change As a Trans Man Navigating Ovarian Cancer” was published on SGO’s blog on June 8, 2022.

Tristan currently resides in Regina (Saskatchewan), Canada.

Links:

Psychosocial Needs and Experiences of Transgender and Gender Diverse People with Cancer: A Scoping Review and Recommendations for Improved Research and Care

Authors: Lauren R. Squires, Tristan Bilash, Charles S. Kamen, Sheila N. Garland

LGBT Health, Volume 9, Number 1, 2022

Spare Parts: Navigating Ovarian Cancer as a Transgender Man | Journal of Clinical Oncology (ascopubs.org)

Authors: Tristan Bilash BSW, RSW and Lauren M. Walker, PhD, RPsych, DOI: 10.1200/JCO.21.01249 Journal of Clinical Oncology, Art of Oncology - published online before print January 12, 2022

PMID: 35020447

1Supportive Care Department, Allan Blair Cancer Centre, Regina, SK, Canada

2Division of Psychosocial Oncology, Department of Oncology, University of Calgary, Calgary, AB, Canada

3Department of Psychology, University of Calgary, Calgary, AB, Canada

When The Software Says You Don’t Exist: Creating Change as a Trans Man Navigating Ovarian Cancer | Tristan Bilash, RSW | Society of Gynecologic Oncology (sgo.org)

Author: Tristan Bilash, Society of Gynecologic Oncology - published online June 8, 2022

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Twitter - @strongtlb1