Jasmine Sturr is a 23 year old living with Juvenile Onset Parkinson’s disease, and secondary gastroparesis/digestive tract paralysis. Her complex condition has required the use of a feeding tube, so this proud tubie ‘eats’ via a feed pump that resides in a stylish backpack for the majority of the day. In 2016, she graduated with her B.S. in Chemistry from the University of Redlands, and her goal is to eventually earn her Ph.D in pharmacology. As the current e-patient coordinator at Stanford Medicine X, Jasmine enjoys getting to work with fellow health care advocates in a job that surrounds her with brilliant minds from around the world actively working to change the status quo. Jasmine is active and well known in the Parkinson’s community, where she uses her scientific training to benefit fellow patients. She is a ‘citizen scientist,’ and a member of the Parkinson’s Research Advocacy Group. She maintains a blog of personal experiences as well as a youtube channel that provides information about Deep Brain Stimulation Surgery, PD treatments, and the science behind the disease and its treatments, as well as personal health updates. She is passionate about patient centered research and patient education and engagement, and enjoys having the opportunity to share her experiences and education to help others living with complex diseases become advocates for themselves and their care.
Emily Bradly is a 25 year old ePatient living in Memphis, TN. Since 2012, Emily has worked as a professional public speaker, writer, and patient activist, working alongside rare disease, arthritis, and chronic pain patients.
In 2011, Emily was diagnosed with Still’s Disease and/or an unspecified autoinflammatory syndrome. She scoured the internet for patient blogs or resources that didn’t sugar coat the experience of being diagnosed or living with chronic pain. After hours searching for people with similar mutations, she came up with next to nothing. This promped her to start her own writing in hopes of creating a community online, using the Tumblr platform. Since then, Emily has been busy speaking at numerous conferences and medical schools including Stanford’s Medicine X, Medicine X ED, and ScriptMed, making it her mission to help bridge the gap between patients and providers.
Currently, Emily is in the process of applying to PA (physician assistant) school while working in a high risk dermatology/wound care clinic. Her expertise includes: designing tools for fostering empathy in the exam room, strengthening the doctor-patient relationship, disclosure of chronic disease in medical education, pain management in the context of chronic illness, as well as the importance of peer-to-peer support for arthritis and rare disease patients. A lot of her time is spent trying to figure out how to take her experiences as a professional patient and experiences as a budding provider, and use those experiences to change the healthcare system.
Dia is a lifelong maker, non profit program developer, severe asthmatic sometimes known as a badassmatic , advocate, Stanford Medicine X ePatient Scholar, member of the Canadian Severe Asthma Network. and past chair of the Asthma Canada (Asthma Society of Canada‘s National Asthma Patient Alliance) . Dia was diagnosed with severe asthma in 2010, following an asthma diagnosis in her childhood. She became interested in asthma advocacy, out of necessity to improve her quality of life. Her lifelong participation in sport led to her BPHE, BS, MS in Physical Education, Kinesiology and Biomechanics. She has spent almost twenty years in sport, health premonition and most recently in developing inclusive opportunities in sport for athletes with disabilities. She refuses to be bound by limited options, getting “sick enough “ for transplant and the notion that reduced quality of life is “par for the course”. She took matters into her own hands by arming her self with research, having the difficult discussions with care teams, advocating for enhanced patenting inclusion in decisions making and becoming an advocate for patients to build collaborative teams for their own care. She is passionate about innovating modalities to improve asthma patients’ lives. She has an infectious enthusiasm for clinical trial participation and patient involvement in respiratory research. She has been known to fall sleep with medical journals. and empowers other patients to not be afraid of research and data, creating a community of empowered, educated and engaged asthmatic patients.
Kerri MacKay is a Canadian ePatient owning severe asthma and ADHD. Kerri was diagnosed with asthma in 2008 when she was 17 after a series of misdiagnoses. A believer in the power of story, Kerri has chronicled many of her health experiences in blog form starting in Fall 2008. Frustrated not only with her asthma, but accessing proper care, finding resources for adolescents with asthma and connecting with people “like her”—thanks to her messed up lungs, she made many friends and best friends whom she remains connected with a decade later! In addition to asthma, Kerri is a grown-up preemie: as a result, she has retinopathy of prematurity, post-septic arthritis in multiple joints, and resulting knee issues from spending her twenty six years so far off balance! In other health nonsense, she has a history of uterine fibroids (which at 21 “couldn’t be the problem” per her doctor—ha!), that once tried to kill her—spoiler alert, with the help of five blood transfusions and emergency surgery four months later in September 2013, she’s still alive (and has a new gynecologist).
Kerri is a peer mentor with Asthma Canada’s Asthma Pals online mentorship program for children 7 to 11, as well as a member of the Government Relations committee, a member of Patient Advisors Network, and the CSAN Patient Group Lead, and has participated in research as a Patient Investigator with the University of Alberta Pulmonary Research Group via CSAN.
Kerri was assessed for and diagnosed with adult ADHD when she was 21, in 2013. This, combined with learning issues affecting her visual memory, made the fact that she’d failed anatomy twice make a lot more sense! A former hater of gym class, Kerri had found herself studying—and then struggling!—in the University of Winnipeg’s Faculty of Kinesiology and Applied Health. Applying the self-advocacy skills she’d learned through her asthma diagnosis, she worked with compassionate and adaptable faculty to make anatomy work better with her brain, and ultimately, earned her Bachelor of Physical and Health Education (and the anatomy credit) in Spring 2014. After being able to understand her brain, Kerri is happy to embrace her neurodiversity and accept the many positives of ADHD—including rarely having a shortage of writing topics—and seeing life differently.
Shari Bookstaff is a marine biology professor and brain surgery survivor who gives presentations to medical professionals teaching them how to connect to their patients in an instant. Shari fulfilled her lifelong childhood dreams and was a tenured marine biology professor near San Francisco. Sporadic dizzy spells and nausea led to a diagnosed benign brain tumor; an “easy, routine surgery.” Then, the unthinkable happened. A 9-day hospital stay turned into 9 months of grueling rehabilitation. A stroke following the surgery took away Shari’s ability to breathe, eat, talk, hear and move. After several weeks in the hospital during which Shari was fed through a tube and breathed through machines, she was transferred to a rehabilitation center an hour away from her home. The only thing giving Shari the will to live was the love and devotion of her kids, then 12 and 8 years old. She has worked hard every day since to regain her dignity, her livelihood, and her spirit. Shari is living proof that determination, hard work, and positivity are the cornerstones to overcoming tragedy. Shari chronicles her medical journey in her book, “When Life Throws You Lemons…Make Cranberry Juice!”
Shari has experienced great medical care, and some not-so-great medical care. Because of the diverse nature of her medical condition, she has been forced to deal with a myriad of medical professionals, ranging from eye doctors to ear doctors to throat doctors to plastic surgeons to physical and occupational therapists. Throughout the course of her journey, she has experienced kind and sympathetic medical care. She has also suffered through impersonal, rude and insensitive medical care. Shari is determined to help as many health professionals as possible instantly connect with their patients to better exhibit compassionate and empathetic treatment. She has inspired hundreds of professionals and students to be the best they can be and hopes to inspire thousands more.
Shari has presented to Grand Rounds at UCSF Medical Center, Kaiser Permanente, professional organizations, and many healthcare classes. She developed, wrote, and published a workbook to complement her presentations. Motivating stories, “empathy” exercises, and critical-thinking questions comprise each module. Select modules can be viewed here: http://momentofcarelifetimeofimpact.com/lifetime-of-impact.html.
Liz Salmi is passionate about empowering regular people to become more engaged in their own health care and improve their experience as patients. After being diagnosed with a malignant brain tumor at age 29, Liz immediately put her digital communications skills to use by blogging about her experience at TheLizArmy.com. Nine years later, Liz is now the Senior Multimedia Communications Manager for OpenNotes, a movement that encourages doctors and other healthcare professionals to share the notes they write with the patients they are caring for. In the fall of 2017 Liz received funding from PCORI to lead the Brain Cancer Quality of Life Collaborative, a stakeholder engagement project with a focus on glioblastoma and palliative care. Liz is a two-time Stanford Medicine X e-Patient Scholar (‘16, ‘17). She serves on the Board of Directors for the National Brain Tumor Society, Patient Advisory panel for the BMJ, and the Working Group on Technologies to Enhance Person, Family and Community Activation with the National Academies of Medicine. Her interests include informatics, precision medicine, neuroscience and design thinking.
As a transgender writer, researcher, and advocate, Micah’s mission is to contribute positively to everyone’s experience with gender. For over seven years, Micah’s blog genderqueer.me has become a leading resource among the nonbinary community. Micah provides continuing education to peers and healthcare professionals at conferences and on campuses across the country. In addition to a full-length documentary about nonbinary gender, Micah’s personal story has been featured in several mainstream media outlets. Micah is currently editing an upcoming nonbinary anthology, and remains a closet idealist.
Adam Hayden (@adamhayden) is a graduate trained philosopher, blogger, and speaker. In June 2016, Adam was diagnosed with the aggressive and deadly brain cancer, glioblastoma (GBM), a grade IV astrocytoma. Following his diagnosis, Adam quickly found ways to apply his formal training in philosophy of science and medical humanities to confront his disease from two distinct, yet complimentary, perspectives. By way of his interest in the history and philosophy of science, Adam studies 20th century competing theories of carcinogenesis, or the origin of cancer. Motivated by the medical humanities, particularly narrative medicine and narrative identity, Adam regularly lectures to both medical students and clinical practitioners on topics related to living with GBM, which presents as both an advanced stage cancer and a nuerological disease. Adam’s involvement with the National Brain Tumor Society (@NBTStweets) brings Adam to attend scientific meetings and research roundtables, featuring top clinical neuro oncologists and researchers from leading academic and commercial labs. Adam is active with science communication (#scicomm) channels to learn effective methods to advocate for research funding in the brain tumor disease space. He co-moderates the Brain Tumor Social Media (#BTSM) monthly Twitter chat, (@BTSMchat), and he was a guest curator for the rotating curation (#rocur) Twitter account @Neurotweeps.
Adam serves as a consumer reviewer for the Congressionally Directed Medical Research Programs (CDMRP) Peer Reviewed Cancer Research Program (PRCRP). He is a class of 2018 participant for the American Association for Cancer Reserach (AACR) Scientist-Survivor Program, and he is a class of 2018 ePatient scholar for Stanford Medicine X | Ed. Adam is the advocacy chair for OurBrainBank, a non-profit, patient-driven smartphone app for people with GBM to better manage their disease by contributing to a world-first patient reported outcome (PRO) database for GBM.
Adam’s published work includes contributions to STAT News, PLOS Blogs, Science magazine, and A Philosopher’s Take. He is currently co-authoring a book chapter with the Indiana University School of Medicine Associate Dean of Faculty Development describing the utility of patient illness narratives as a vehicle for biomedical research advocacy. Adam is the co-founder of an endowed academic scholarship at Indiana University School of Liberal Arts for students pursuing an undergraduate or graduate degree in philosophy. Adam was recently awarded the Distinguished Alumni award by Indiana University School of Liberal Arts.
Adam lives with his wife and three young children, aged six, four, and two years old, in Indianapolis, IN.
Facing a life-limiting illness motivates Adam to do his very best work today, and he often jokes that if it weren’t for the terminal brain cancer, he’s in pretty good health. Adam documents his journey as a graduate trained philosopher living with glioblastoma at his personal blog, www.glioblastology.com.
Amy Li is Founder of Dance4Healing, a social venture leading the trend of telehealth into physical rehab space, inspired by her own fight against stage IV cancer, partnered with Stanford for Supportive Care Program and clinical trial. Dance4Healing is a social platform connecting dance teachers to patients, using artificial intelligence and behavior design to recommend personalized music and dance, dance buddies and patient groups, alleviating mental & physical pain, and improving quality of life. Please watch this 2 minute video:http://bit.ly/D4HRocks
At age 12, Amy won first prize in a county-wide speech contest. She performed in big theaters, and MC’d many educational and corporate functions. This gave her a lot of confidence and made her believe she can accomplish anything in life. In 2007, she climbed Mt. Whitney; in 2011, she ran a marathon; in 2012, she fought cancer; in 2013, she conquered cancer.
Amy is a graduate from Singularity University, known for empowering future leaders to use technology to positively impact the world. AUX and branding leader and expert for global brands such as Yahoo, AT&T, VW, HTC, and Playstation, built/led UX and creative teams in design agencies and large tech companies. A frequent speaker on UX discipline, innovation and the future of design. In 2009, The New York Times, independently reviewed and selected her first iPhone App Have2P to feature as “App of the Week”, leading to a major media storm in over 50 publications, such as NBC, Yahoo! News,Gizmodo, Popsugar, praised as third on the list of ”11 Coolest App ever”.Resulted in millions of downloads within 4 weeks, and a successful cross-sale of a whole suite of AT&T R&D apps. A board of director ofHumanity+, an international non-profit advocate using technology to expand human capacities. Her non-profit work was mentioned by TIME magazine, and featured in major Chinese media.
Roger Holzberg / Personally, Roger is a father, a two time cancer caregiver, and a 14 year adult survivor who developed his own dynamic dosing system to inform his daily prescription hormone needs. / Professionally, he was an award winning Disney Imagineering creative VP who left his dream job to become the first creative director (consulting) at the National Cancer Inst., developing and launching the “evolution” of cancer.gov. He then formed Reimagine Well with Leonard Sender, a world renowned hematologist/oncologist, with the goal of evolving the patient journey by advancing Disney’s “architecture of reassurance” into an “architecture of healing”. Every week we ask patients, “If you could be treated anywhere in the universe, and there were no rules, what special place would best promote your healing?” While in treatment patients go to their “immersive healing places”; and we empower them with digital Learn Guides for education and support in the post-treatment phases of their journey. Experience an Infusionarium!