This is a fantastic article, so deeply true on many levels for so many. I’m working on an an innovation in the medical services area, palliative care focus, disconnecting it directly from death and dying and changing the entire framework from a fight/war/win/lose to befriending your cancer, building a positive relationship and deep awareness that while your caner is part of you, needing to be accepted (doesn’t mean giving in) and through this acceptance, creating room for living and thriving, not dying. It’s just starting our, very formative and I’m working with some of the most innovative design thinking doctors to completely change the paradigm. One of the docs is BJ Miller, MD at UCSF recently interviewed by Oprah (great interview, find it on OWM Soul Sunday’s May 7) is all about changing how we see our relationship with our cancer, creating tons of space for imagination and new projects.
It’s called the GusProject.com and I have a lot of work to do on it. It’s compelling and I’ve been convinced by so many people who work on innovation and design, that what I’ve started for myself will help so many other patients. So I’m going to conduct some focus groups of cancer patients, providers, kids and their parents, etc. Collect data on how each of these groups “see” their cancer, color, sound, shape, etc. and roll up all that info and ask the Portland design, music and art community to help design Gus’s for people to use for their own experience. The income we get will go for operations, Gus’s and collateral material and for an innovation fund to fund patient led projects ($500 — $1,000) into the universe. I call it. 1,000 plates spinning full of imagination and energy, designed with the values and qualities of GusProject all at once. Can you imagine how many ideas cancer patients have? It’s going to be amazing. Part of receiving the little grants will be a commitment back to the larger community in the country to share their idea with us and the world.
Instead of just waiting to die, living in fear, patients can either by themselves or partner up with a friend, caregiver, supporter and design a projects that they think will make a difference according to the GusProject simple grant guidelines. I’m a stage 4 breast cancer patient, having had BC for 26+ years. I am also a designer in the public sector, having introduced entirely new ways to leverage limited resources for common gain by reducing community risk and building community resilience.
This is a long comment to your inspiring article. I also need good people to help me think about making this project amazing, compelling and generating the very best of our selves to help people deal with such serious challenges every day with spirit. I’ve been very lucky to survive for so long and I just found out two weeks ago, my scans show no cancer in my system right now. So, totally and unbelievably, it looks like I’ve been given the gift of some time to create a Masterwork, combining my awesome public design skills with my incredible cancer experience into one totally compelling project.
Anyone can help me who is honest, has integrity and wants to be part of something that is bigger then life, but imaginable. That’s the idea in a nutshell. I’m not a huge web site designer and am hoping Squarespace will help me with the design and making the site incredible and if each person offers something they already do well, it should start to feel effortless. Credit is easy, it’s abundant in my book and when dealing with cancer it’s our job to come from abundance, not deprivation or scarcity. I’m reaching out to you because you seem authentic to me and interested in asking the harder questions.
My name is Andrea Schneider, MA. I live in Portland, was raised in Palo Alto and moved to Portland in 2004. My A Team Cancer Team is at UCSF SF and I’m surrounded by incredibly smart people who want to do great things. We are definitely going to need help with the tech side of this project in every way. There is a big opportunity for podcasts, apps for patients, caregivers, doctors, etc. There is plenty of opportunity for some people to design something or many things that will make a huge difference in the lives of many, even maybe get famous if that’s what would drive them to help.
I would love to hear from you and any of your friends with ideas, for conversations and to think outside the box on helping me do something major and great. I have so many ideas, everyday, about how we can design something so incredible. I want to make sure we involve kids and their parents, the many people who professionally support the cancer patient, but are rarely asked about their experience, ideas and learn from patients. It’s very important the patients are leaders in this project, after all when you have cancer, everyone else is paid to help, I want to hear from them. In the art community, I’d love to hear music based on what we learn from patients, all kinds of stories from the heart that we can design around and make tangible. If you go to GusProject.com you will see Gus and Me on an Angel Flight, which is another great story. Professionally, on LinkedIn there is a little more about me as a professional. I don’t do a great job keeping up on Facebook, but I’m there too. This project is the first time I’ve ever been center stage myself on a complex design project I was hired to solve for a federal or local public problem. I’ve never put myself in the picture, this is the first time and it’s a little scary, but the right thing to do. Thanks for letting me try it out.