Stanford Medicine X is proud to announce the ePatient program delegates for our 2015 conference! Please note we will open a limited number of additional spots for a Spring 2015 submission deadline for those ePatients who wish to update existing applications with new information or for ePatients who missed the Fall submission deadline. Please also note ePatients delegates for Medicine X | Ed will be participating in our new conference, Medicine X | Ed, taking place Sept 23-24, 2015 with a focus on the future of medical education.
Medicine X 2015 ePatient Program Delegates
Natalie Abbott is a rare disease ePatient, and has been involved with the Moebius syndrome ePatient community since it developed an online presence. In both her involvement in curating the social media presence of the Moebius Syndrome Foundation and in her personal blogs, she works to present a complete and unfiltered view of life with Moebius.
Matthew Argame is a sophomore at California State University Long Beach. As a pre-med student and ePatient, Matthew hopes to gain insight on what health care means on both the patient’s end and physician’s end. Matthew has been living with moderate hearing loss from very early on in his life, and only recently has he become equipped with hearing aids. Since then, Matthew has noticed many improvements in his life, and he hopes to share his insight as a young individual with a disability often stigmatized as a disability for the elderly.
Britta Bloomquist is a 26-year old epatient from the north woods of Minnesota, who loves the connectivity of social media to bring friends together in the name of chronic illness. Britta has suffered with joint pain and other ailments for 15+ years. In 2009, Britta was diagnosed with the highly controversial Chronic Lyme Disease, and in 2013, Britta was diagnosed with Ankylosing Spondylitis. Britta previously wrote for the now defunct blog, Chronically Young, and she also advocates on multiple social media outlets.
Catherine Blotner understands the importance of patient advocacy after undergoing back surgery at 16 and brain surgery at 17, while living with epilepsy since the age of 13. Blotner founded and co-facilitates #BTSM chats for the brain tumor community on Twitter, and blogs about the psycho-social aspects of having a chronic condition. As a college student studying family dynamics, Blotner hopes to change the future of participatory medicine for chronically ill adolescents and young adults.
Marvin Calderon Jr.
Marvin Calderon Jr., is a student, a singer, and a proud ePatient, diagnosed with Cervical Dystonia, a chronic neurological disorder. After being inspired by his best friend who shared her story of using social media sources to cope with Rheumatoid Arthritis, he was moved to be engaged and empowered in bettering my health care. This led him to becoming a 2014 Medicine X ePatient Scholar and sharing his personal testimony of music inspiring health and to utilize what you love to get better. His goal is to help his Cervical Dystonia community and strengthen his skills as an advocate of health care and using social networking in order to do so. He is incredibly grateful and humbled to have been selected as a Stanford Medicine X ePatient Scholar again for the 2015 conference and is looking forward to another unforgettable experience!
Matthew Charron believes in health care as a fundamental human right. He believes that fundamental human right can only be realized when health care providers, scientists, and patients have access to all of the scientific evidence.
Cathy (M.C.) Collet
When Cathy’s mother was diagnosed with ALS in 1996, her family found it outrageous that the prognosis was the same that Lou Gehrig faced in 1939. Since her mom’s death in 1997, Cathy has worked hard to raise awareness and improve the fight against ALS. She supports several ALS organizations and returns to advocate on Capitol Hill annually. Cathy has testified on behalf of those with ALS at two FDA hearings. She independently blogs (www.alsadvocacy.com) and tweets (@alsadvocacy) and advocates and prays in hopes that a treatment will at long last be delivered.
Jamia Marisha Crockett
While exploring the impact of Multiple Sclerosis to her previously “normal” life, Jamia has re-mastered her life as a wife, mother of 2 busy little boys, and a professional trail blazer. Jamia’s ultimate strength and calling was realized in 2012 as she embarked on a new path as a national speaker and advocate for MS. Sharing her challenges and triumphs with others afflicted, their support systems, and anyone caring to know more about life with MS has brought higher purpose, healing, and a new life. She manages a new blog, MS is a Mother… and has been featured in various online health journals. She strongly advocates to patients that they need to be a part of their own healthcare conversation. She is looking to expand her reach and keep pushing the envelope of what the patient experience is really like. Follow her on twitter @MamaSissyKat and see what she really thinks!
Diagnosed with Acute Myelogenous Leukemia in 2013, Matthew Dudley underwent chemo and a stem cell transplant. He has been given a second chance at life and has returned to his previous profession as a physician with The Alaska Hospitalist Group. His perspective from both sides of the stethoscope bring an understanding of medicine which is fairly unique. He hopes to build on this knowledge to help improve health care for all involved.
Danielle Edges is a mother to two daughters, Alexandra and Aria. Alexandra was born with a rare medical condition, Heterotaxy Syndrome, resulting in 5 heart surgeries and an abdominal surgery all before the age of 4. She is excited to be a part of Stanford’s 2015 MedX program as an ePatient caregiver, where we can merge the worlds of social media and medicine to create better outcomes for these patients.
Allison Ferlito believes that every engaged patient deserves an equally-engaged healthcare team. By authentically chronicling life with type one diabetes on her blog, Very Light, No Sugar, as well as @verylightnosuga, Allison aims to inform and empower other patients to seek the care that they deserve and to articulate this need to their healthcare teams.
Julie Flygare, JD is the founder of Project Sleep, a narcolepsy spokesperson and published author diagnosed with “narcolepsy with cataplexy” at age 24, in her second year of law school. In 2012, Julie published Wide Awake and Dreaming: A Memoir of Narcolepsy, which won First Place in the 2013 San Francisco Book Festival Award for Biography/Autobiography. Recognizing that people with narcolepsy feel lost and alone, Julie created the NARCOLEPSY: NOT ALONE international awareness campaign in 2013, collecting over 1,200 photos from all 50 US States and 44 countries around the world. Staying up to date on new media trends, Julie created the first-ever narcolepsy advocacy mobile app, awareness video series and infogrpahic to empower advocates with essential communication tools.
Mark Freeman struggled with OCD, depression and related anxiety and addiction issues for more than a decade before finding his way to recovery. He now focused on helping others find their own path to mental health and wellbeing. With that goal in mind, he co-founded the “Everybody has a Brain” online mental health community, which uses art, video, and personal stories to promote a proactive, preventative approach to maintaining and improving mental health. He’s passionate about using design and systems-thinking tools to shift the prevailing view of mental illness from an illness-first approach, to a health-first approach that recognizes everybody has a brain. Everybody has varying levels of mental health that are affected by the decisions we make every day.
Cyrena Gawuga had always planned to be a physician, but her spinal cord stroke in February 2014 turned her into an ePatient instead. Even though she left medical school in 2008, she has found that experience to be invaluable in her interactions with the health care system. She believes that Medicine X will give her the opportunity to start on the path of bringing those tools to ePatients, and all patients, without the steep price tag of medical school.
Erin Gilmer [Medicine X | Education Delegate]
Erin Gilmer is a health policy attorney and patient advocate active in the ePatient community, speaking around the country to provide a voice for those who struggle with health and economic issues. Since 1999 she has been diagnosed with 4 autoimmune diseases and 17 chronic health conditions, has had 6 major surgeries, while seeking and engaging in innovative solutions in health care and technology. Ms. Gilmer uses her personal and professional experiences to assist others logistically and emotionally through the healthcare system, pursing the realization of her belief that health is a human right.
Britt Johnson chronicles the absurdity of living with chronic disease through her blog and related social media platforms, “The Hurt Blogger.” She is a writer sharing honest experiences of life with chronic pain and illness while always looking for the humor in life. She works as a consultant with a wide range of health groups to ensure patient input is being incorporated to better shape the future of healthcare. Having lived with autoimmune arthritis since age seven, she aims to change the perception of ‘arthritis’ while challenging what is possible by training for her childhood dream of climbing Denali (Mt. McKinley). Having lived in Texas, Alaska, and Montana, she currently resides in Los Angeles, CA with her husband and one very stubborn cat, and works for Stanford Medicine X as the Community Outreach Coordinator. Follow her on Twitter: @HurtBlogger.
Emily Kramer-Golinkoff [Medicine X | Education Delegate]
Emily Kramer-Golinkoff is a Co-Founder of Emily’s Entourage, a 501©3 that has raised over $670,000 for Cystic Fibrosis research since December 2011. Emily completed her master’s degree in bioethics and certification in clinical ethics mediation at the University of Pennsylvania. Emily was a 2013 Medicine X ePatient Ignite speaker, and continues to speak and consult with non-profits and universities across the country. Follow Emily on Twitter at @emilykg1 and Emily’s Entourage on Facebook (Emily’s Entourage), Twitter (@EmsEntourage4CF) and Instagram (@EmilysEntourage).
Sarah E. Kucharski, also known as Afternoon Napper, is a consultant, public speaker and advocate fostering the patient voice in medicine through design thinking for innovation and social media. Her special interests include patient engagement, the patient experience, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, clinical trials and health literacy. She has a B.A. in journalism, a M.A. in liberal studies and a certificate from Columbia University’s Narrative Medicine program. She also is CEO/Chairman and Founder of FMD Chat, a nonprofit medical organization, and Coordinator of ePatient Programs for Medicine X at Stanford University. Follow her on Twitter @AfternoonNapper and visit afternoonnapper.com.
At the age of 14, McKenzie Libbesmeier, an active teen, began to suffer with debilitating pain and fatigue. Initially diagnosed with clinical depression, she knew there was another answer and better way to deal with the intense pain and emotions she was experiencing, and began her blog “Life According to Kenz,”. Now a freshman in college and diagnosed with Juvenile Enthesitis-related Arthritis, McKenzie’s widely read blog inspires those living with chronic illness to remain hopeful, thankful, and positive, while pushing for greater understanding and research for autoimmune arthritis.
Devon Low is a member of the care circle for his elderly mother. His focus is on using online tools to gather and manage all the informational aspects of her care so that other members of the circle can more effectively stay informed and be involved in their parts of the circle. He also wishes to raise awareness of the need for such online information management for similar, family-based generational care circles.
Abby Norman is a New England based writer and editor. Her work has been featured on The Huffington Post, HuffPost Live and recommended by Time Magazine, Alternet and NPR. She blogs regularly about healthcare for BHM Healthcare Solutions and is a regular correspondent for The Urban Times, All That Is Interesting & Human Parts on Medium. She has written at length about healthcare reform and her personal experience as an endometriosis patient and advocate.
Marie Ennis O’Connor [Medicine X | Education Delegate]
Marie Ennis-O’Connor is excited to attend for a second year as a Medicine X ePatient scholar. Since her experience as an Ignite Speaker at Medicine X in 2014, she has become a passionate advocate of narrative medicine. In the past year, she’s presented and published on the role of story in medicine. She’s particularly interested in the ways in which patients form online communities of support which in turn informs and empowers more patients; and the ways in which story can become the common ground for patients and physicians to come together.
On campus, Nisha Pradhan serves on the Executive Boards of both her Pre-Health Club and of her campus’ programming council in hopes of spreading the type of critical thinking and creativity behind Medicine X that has allowed healthcare issues and medical advocacy to take on a patient-centered, all-inclusive form. Charismatic, compassionate, and gifted with metis (the ability to see patterns in the world and derive a gist from complex situations), Nisha, and anosmia patient, loves meeting new people, smiling, singing, being around kids, and walking in nice weather.
Seniors, patients, their spouses and families need an advocate. As a new senior and a citizen, Natrice Rese believes it is important to raise awareness, and use our voices to make a difference and reach all segments of society.
Joe Riffe is a survivor. Having fallen 110 feet from the top of a waterfall, Joe went from being a Paramedic to the “Prosthetic Medic.” Having fought his insurance company for an adequate prosthetic that allowed him to return to work and be the husband and father to three he wanted to be, Joe advocates so that no amputee should live with a second-rate prosthetic. He works to show that there is a difference between being alive and living when you have a prosthetic.
Leslie Rott [Medicine X | Education Delegate]
Leslie Rott was diagnosed with lupus and rheumatoid arthritis in 2008, at the age of 22. She is an ePatient, health activist, patient advocate, and blogger at a variety of sites, including her personal blog Getting Closer To Myself. Leslie has a PhD in sociology from the University of Michigan and is completing a Master’s degree in health advocacy from Sarah Lawrence College. Leslie took part in Medicine X 2014 in the engagement track, and is excited to be back this year sharing her experiences in a main stage talk as part of MedXEd.
At Not Standing Still’s Disease, Kirsten Schultz writes about her personal experiences with Still’s Disease and issues facing children and young adults affected by rheumatic and other chronic diseases. She’s written at length about intimacy, relationships, self-advocacy, and the transition to adulthood for chronically ill children. She hopes to learn more about how to inspire and encourage other patients to advocate and how we can help improve the doctor-patient relationship for all.
Sabine Schwab is a 32 year old native German who moved to the USA in 2010. After 4 years of working hard and enjoying life to its fullest, she was diagnosed with a grade II-III astrocytoma – a brain tumor! She quickly had to familiarize herself with the American health care system. She put together a team of health care providers that now consists of members from 2 different continents. She is an international ePatient, a young mom, a blogger at sabineandmichael.blogspot.com and a PdD who believes in the power of information sharing, integrative approaches and the instinct to heal mind, body and soul.
Christopher shares thoughts and insights on his life with type 1 diabetes at ‘A Consequence of Hypoglycemia’. Christopher hosts the weekly podcast, ‘Just Talking’ featuring interviews and stories from a diverse range of guests. He moderates ‘My Diabetes Secret’, which hosts anonymous confessions from the diabetes community, offering a safe, judgement-free opportunity to share fears, frustrations with diabetes. He believes in the power of storytelling, that the stories we share strengthen patient communities, and that every story is worth telling no matter how ordinary it may appear to be on the surface. He lives in San Francisco with his fiancée, two cats, four fish, and an ever-present view of Karl the Fog.
Scott Strange, a 2014 MedicineX ePatient Scholar and 2015 MedicineX ePatient Delegate, has been a Type 1 diabetic since 1970 and clinically depressed for almost as long. He is especially interested in removing the stigma associated with so many health issues and with brain health in particular. He blogs at Strangely Diabetic and you can find him on twitter as @strangely_t1.