We’ve been consistently blown away by the amazing diabetes advocates who apply for our annual DiabetesMine Patient Voices Scholarship Contest, and this year is no exception! Remember, the aim of this annual contest is to “crowdsource patient needs” and plug engaged patients directly into the innovation landscape.
Each Spring, we take applications from empowered PWDs (people with diabetes) and active caregivers to share their passion for giving a voice to daily diabetes challenges and unmet needs. The top entrants receive an “e-Patient Scholarship” to attend our DiabetesMine Innovation Summit that takes place in Northern California each Fall. Our winners act as “delegates” for the patient community, expressing our needs and desires to decision-makers in pharma, medtech design, software and app development, medical device regulation, national advocacy groups and more.
2018 Diabetes Advocates Extraordinaire
Over the past several weeks we’ve enjoyed interviewing each of our 2018 PV Contest winners, who will be attending our annual Innovation Days next week, on Nov. 1-2 in San Francisco.
Now’s our chance to share the links to our chats with each of these tremendous advocates, in which they share their personal stories and POVs on technology, innovation, advocacy and what they believe can be done better.
Please enjoy clicking on the names of each of these winners, to access their in-depth interviews (listed here in alphabetical order):
- Kamil Armacki – a T1D student in the UK, studying Accounting and Finance at Manchester Metropolitan University. He’s been involved in several CGM focus groups, and a year ago, decided to start his own YouTube channel called Nerdabetic, where he discusses and reviews new diabetes technology. He writes: “I have recently been selected to be a disability mentor at my university and I will be mentoring a group of 10 disabled students starting this September. Additionally, highly innovative company MedAngel that makes Bluetooth enabled insulin thermometers nominated me to take part in Young Patient Advocate program… therefore, I am going to Vienna this July to do my advocacy training.”
- Cindy Campaniello – a T2D in New York, who’s active with the DiabetesSisters group for women with diabetes. She’s a former Sales and Bank Manager who says she was fired for diabetes in her last sales job (!). She writes: “Type 2’s need help. Desperately! … CGMs are needed for type 2’s. I’m sick of doctor’s telling my Diabetes Sisters to test in the morning only… (whereas) seeing your numbers climb from your diet would influence them more. Support is key to management.”
- Phyllisa Deroze – an American living in the United Arab Emirates, who was diagnosed with type 2 diabetes in 2011. She’s an Assistant Professor of English Literature by day and a diabetes advocate around the clock, blogging at diagnosedNOTdefeated.com. Her academic research highlights feminist writers, but she say she’s “looking to move into medical narrative so that I can merge my academic interests with my advocacy.”
- Moira McCarthy – this Massachusetts D-Mom is a well-known writer, author, and speaker in the diabetes advocacy space. She tells us: “I have long been passionate about not just curing type 1 and developing better tools to treat it, but also about encouraging folks to live well with it AS we move toward those goals. In recent years, I’ve noticed a huge uptick in fear in the community, particularly among caregivers and parents of folks with T1D. I’ve been working on a concept and have begun speaking to folks (and device manufacturers) about it. I call it ‘Thoughtful Innovation; Compassionate Integration.’ What I mean by that is across the board embracing a strategy of building confidence as we roll out new tools and programs.”
- Terry O’Rourke – a now-retired former avionics technician for a major commercial airline from Portland, OR. He was diagnosed with LADA (latent autoimmune diabetes in adults) at age 30 in 1984, and has seen many changes in diabetes tech and tools — from early ’80s urine glucose strips and insulin pumping, to finding support in the online community, and now using a CGM and even building his own do-it-yourself closed loop system. He also lives with a 10-year-old diabetes alert dog named Norm. “We need an industry of compassion, one that is confident enough to show new adopters that yes, these tools make life easier but no, you won’t be lingering on disaster for a bit without them,” Terry says. btw, he also lived on a sailboat for 15 years while living in the Bay Area!
- Claire Pegg – a Colorado woman who is both living with type 1 herself and caring for her 85-year-old father who has T1D and is struggling with dementia. By day, she’s a Materials Dispatcher at Anythink Libraries, dealing with Collection Development and Interlibrary Loans. In her private time, she’s been involved in clinical research trials for sotagliflozin and the Medtronic 670G system. She writes: “We will soon be facing a crisis because increased quality of care has led to type 1’s living far longer than they ever have. There is a very little residential care available for senior citizens with type 1, leaving families with no choices when their loved ones age. To quote an administrator of a nursing home I was visiting, there was no one able to manage insulin and blood sugars ‘because diabetics are not supposed to live this long.'”
- Chelcie Rice – a longtime T1D in Georgia who’s had a longstanding gig as a diabetes comedian. He’s passionate about attending our event “because as an African-American living with diabetes and as an advocate I think it’s my responsibility to represent one of the groups of people who are largely affected by this chronic illness. For far too long there has been a disproportionate number of people of color participating or volunteering for health studies and panels. My attending would hopefully inspire others like me to become part of a solution.”
- Jim Schuler – a T1D who’s a medical student at the Jacobs School of Medicine at the University at Buffalo in New York, preparing for a career as a pediatric endocrinologist. He writes: “Diabetes is the reason I am in medical school. Attending and being a counselor at diabetes camp made me choose to build my life around helping others… I wanted to do more than ‘just’ be a physician, however, and research is an avenue to do just that. One of my projects during my PhD years is analyzing data collected at diabetes camp to improve care for children with diabetes. Additionally, I am working on an interface for better collection of data, and keenly want to learn as much as possible about design and human factors engineering as it relates to diabetes.” He also runs support group for teenagers and young adults with diabetes called “D-Link” and is generally interested in how adolescents utilize technology.
- Stacey Simms – this North Carolina based D-Mom is well-known as host and producer of Diabetes Connections, a weekly podcast for and about people with T1D. She produces the show through her company, Stacey Simms Media, and provides voice work for select commercial and industrial clients. She also runs runs a local Facebook group of 500+ parents of T1D kids, where they can ask questions and share tips. One of her pet peeves is pump infusion sets: “They leak, they bend. There is no easy way to figure out what size, shape, depth and inserter is right for you – you just have to buy a case and hope it works for you. There has to be a better way.” Meanwhile, she’s excited to share learnings from our Summit with her listening audience.
We look forward to meeting all of these amazing folks in person next week, and of course connecting them with industry, provider and regulatory folk in attendance, to “bring the real” on what it’s like to deal with all things diabetes on a day-to-day basis.
We’re super excited for this year’s Fall innovation program, happening on Nov. 1-2 at UCSF’s Mission Bay biotech conference center. This year, we’re actually combining our Innovation Summit and D-Data ExChange technology forum under the umbrella of a fresh new learning platform called DiabetesMine University (DMU). Should be an enriching educational and networking experience for all!
Starting next Thursday, be sure to stay tuned for tweets under the hashtags #DMineSummit18 and #DData18 for live updates of event proceedings.