Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. Commemorating ten years in the field of patient advocacy,  Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.

Lara’s Socials: 

Website : https://protect-au.mimecast.com/s/8GvVCBNqnLiVGkQDtzetCj?domain=larabloom.com/
Facebook: https://www.facebook.com/larabloomeds
Twitter: https://twitter.com/larabloomeds
YouTube : https://www.youtube.com/larabloom
Instagram : https://www.instagram.com/lara.bloom/

Lara Bloom, President and CEO of The Ehlers-Danlos Society

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

Laurie Adami, Patient Advocate

Doug Lindsay has spent the last two decades investigating and tackling rare, complicated medical conditions – first in himself and his family and now through his Personal Medical Consultant service. An innovator, Doug partners with clients and experts to make new things happen. He works to get clients who are stuck in the medical system unstuck. To aid him in his work, he strives to understand healthcare from all levels of organization, from the individual to health systems, public health, and global health. Doug’s dogged, indefatigable ability to chase down answers to an individual’s complex problems makes him a special asset as a teammate and Personal Medical Consultant.
In addition to his Personal Medical Consultant service, Doug Lindsay
• Co-chairs PCORI’s Congressionally-mandated Rare Disease Advisory Panel (RDAP)
• Co-chairs Washington University School of Medicine’s Community Advisory Board
for the Institute for Clinical and Translational Sciences and the Institute for Public
Health (ICTS & IPH).
• Is Community Advisory Board member for the National Institutes of Health’s
ACTIV-1 IM trial. (ACTIV is the US government’s public/private/nonprofit
collaboration for Accelerating COVID-19 Therapeutics and Vaccines research.)
• Is member of the National Institutes of Health’s ten-person ACTIV COVID
Biospecimen Prioritization Committee. (NIH)
• Is member of Academy Health’s Global Health Interest Group.
• TEDx talk Operation: Adrenal Gland can be found at TED.com
• Was speaker in the panel kicking off Academy Health’s Datapalooza, 2019
• Has twice been an ePatient Scholar at Stanford Medicine X (2017, 2019)
• Appeared on The Dr. OZ Show in fall 2019 as example of The Power of 1 (to make
a difference).
• Was the first patient invited to give a fireside chat for the Health Management
Academy, which hosts C-Suite education conferences for the nation’s 100 biggest
hospital systems, 2017.
• Co-chaired aviation humanitarian nonprofit Wings of Hope’s “Taste of Hope”
fundraiser
• Has been keynote speaker for national organizations like AHIMA, for healthcare
conferences like the Society for Participatory Medicine, and at internal corporate
events for firms like Pfizer.
• Graduated with honors from Rockhurst University’s Honors College with a BS in
biology in 2016.
• CNN online feature “This college dropout was bedridden for 11 years. Then he
invented a surgery and cured himself” on his story was the #3 article globally across all media platforms for all of 2019 for time readers spent reading it.

Doug Lindsay, Patient Advocate

Emily Parks is a chronically ill young professional based out of San Francisco working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital.
Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals firsthand has led her down the path of studying the impact of medical trauma and medical PTSD on patients and its influence on treatment outcomes. 
Emily founded the organization POP!, where she hosts patient lead discussion groups on all things medical PTSD related in an effort to learn what providers need to know about the mental health side of the patient experience.

Emily Parks, Patient Advocate

Dr. Diana Londoño is the founder of Physician Coach Support.com, where doctors can get free and confidential, peer led support over Zoom 7 days a week. 

She is a certified life coach and founded this platform to help her colleagues as burnout rates are at 60% or greater for many specialties. She received the Los Angeles Medical Association Physician Leadership Award for her work with Physician Coach Support. 
 
She is one of the few female Latinx urologists in the country making 0.5% of Urologists. She has experienced burnout twice herself and because of that, she writes and speaks passionately about wellness and humanity in medicine on social media and on television.
 
She is the co-host of the live stream podcast “Supernova Sistas Physicians in Motion” in which the mission is to bring joy, positivity, and light to your day by discussing topics such as mindset, gratitude, self-care, connection, and integrating mind, body, and soul for optimal health. 

She says if Physician Coach Support.com can pull just one doctor from the brink of burnout, it is all worth it.

Physiciancoachsupport
https://dianalondonomd.com/
https://www.youtube.com/@dianalondonomd
(4) Diana (Thorne) Londoño, MD | LinkedIn
Diana Londoño, MD. Urologist, Life Coach. (@dianalondonomd) • Instagram photos and videos
https://twitter.com/DianaLondonoMD
https://open.spotify.com/show/0fTphUt6fh6s0VeuU8WjbV?si=5550d9be2ba24d8b&nd=1

Diana Londoño, founder of Physician Coach Support.com

Dr. Neuro has 10+ years of experience of providing clinical, policy, and technical leadership for infectious diseases worldwide with the U.S. Government. In recent years, he has provided his support for the 2014 Ebola Outbreak, HIV/AIDS, Tuberculosis, Malaria, Zika, Monkeypox, and COVID. His focus is in bridging clinical evidence to actionable policy that targets highest risk populations and ensuring accessible/equitable access for all. 
During his off-time, he spends countless hours fighting misinformation/disinformation & answering questions on social media while encouraging evidence-based decisions for his community.
 
Link:
Twitter - https://twitter.com/Neurofourier/
Twitch – https://www.twitch.tv/dr_neuro

Dr. Neurofourier, healthcare expert

Dr. Victor Montori is Professor of Medicine at Mayo Clinic. He is a practicing endocrinologist, researcher, and author and a recognized expert in evidence-based medicine and shared decision-making. Dr. Montori developed the concept of minimally disruptive medicine and works to advance person-centered care for patients with diabetes and other chronic conditions. He is the author of Why We Revolt – a Patient Revolution for Careful and Kind Care.

Victor Montori Interview

Baktash Ahadi is the founder of Taleem, a strategic communications company. He is also the creator and host of the Stories of Transformation podcast. The tragic events of 9/11 set him on a path of examining why people do what they do. Upon graduation from college, he decided to serve in the Peace Corps as an educator in a rural village in Mozambique. His father learned English from a Peace Corps Volunteer in Kandahar in the 1960s and that experience was the inspiration for his family to come to the United States. After completing his service in the Peace Corps, Baktash went back to Afghanistan, the country of his birth, to serve as a combat interpreter and cultural advisor for three years supporting military and reconstruction efforts throughout the country. This life-changing experience put his Afghan-American identity on the front line on the War on Terror in Afghanistan. After his service in Afghanistan, Baktash produced and translated a number of award-winning documentary films about free speech, photojournalism, the refugee crisis, and violence against women. He writes, speaks, and teaches regularly about individual, organizational, and societal change. He holds degrees from The Johns Hopkins University and Susquehanna University.

Baktash Ahadi, host of the Stories of Transformation podcast

Kimberly Richardson - seven year cancer survivor of ovarian cancer, Granulosa Cell Tumor, Stage 3A. Prior to diagnosis, Ms. Richardson has 25 years of urban planning and community economic development experience. Accomplishments included creating a TIF district for the development of a major hotel and restaurants; rehabilitation and new construction of single family and multi-family housing units; and revising suburban business and housing code enforcement zoning ordinances. Ms. Richardson has been active since treatment in various forms of advocacy. As an advocate leader for the Ovarian Cancer Research Alliance (OCRA), she speaks with legislators on the importance of funding for ovarian cancer research, has crafted state legislation for an Illinois gynecologic cancer commission and has spoken at the national conference on patient advocacy.  In her advocacy role with DoD/CDMRP/OCRP, she is both a pre and peer reviewer and contributing writer to the agency’s patient advocacy blog GLOBELTHON.  She shares her perspective on disparities in genetic testing and clinical trials through multiple platforms and hosted citywide events in partnership with FDA’s Oncology Center of Excellence and CISCRP to increase minority participation. Ms. Richardson currently works with local elected officials and community based groups on health equity surrounding COVID19 and has shared her perspective as a cancer patient and advocacy partner with WCG. She has developed a program model called Survivors Advising Scientists that include training modules on basic scientific inquiry for survivors and new patient advocates that will be showcased at this year’s virtual ASCO conference.

Kimberly Richardson

Dr. Sunita Puri is the Medical Director of the Palliative Medicine Service at Keck Hospital and Norris Cancer Center of the University of Southern California, where she also serves as Chair of the Ethics Committee. Sunita is the author of That Good Night: Life and Medicine in the Eleventh Hour, a critically acclaimed literary memoir examining her journey to the practice of palliative medicine, and her quest to help patients and families redefine what it means to live and die well in the face of serious illness. Sunita received writing residencies at the MacDowell Colony, UCross Foundation, and Mesa Refuge, and was a finalist for the PEN Center's Emerging Voices Writing Fellowship. The recipient of a Rhodes Scholarship, her writing has appeared in the New York Times, the Los Angeles Times, Slate, and the Journal of the American Medical Association. In 2018, she was awarded the Etz Chaim Tree of Life Award from the USC School of Medicine, awarded annually to a member of the faculty who, in the eyes of the campus community, models and provides humanistic and compassionate care.

Sunita Puri, Medical Director of the Palliative Medicine Service at Keck Hospital

The Health Design Podcast brought to you by the Journal of Health Design(www.journalofhealthdesign.com). Features interviews with the world's leading health design experts including clinicians, designers, patients, authors and researchers. Better health by design.

Popular tracks tagged #Health Design