My amazing doctor and her Vasculitis Colleagues are having a Symposium next week and patients are invited to come. By supporting these kinds of events we are sending a message that we want more of this going on in our communities. Forward momentum. Try and make it out there if you are one of the Vasculitis patients living in Alberta, BC or Saskatchewan. Maybe we’ll see you out there. It will be in Calgary on October 2, 2014 and the detailed info is below. Here is the information: 2014 ACH VASCULITIS SYMPOSIUM PATIENT & PARENT FORUM 2014 Vasculitis Evening Forum How does vasculitis research improve the care of patients? Thursday, October 2, 2014 1800-2030 ACH Kinsman Learning Centre (4th Floor), Alberta Children’s Hospital PATIENT & PARENT FORUM (Dinner Buffet) This forum is an opportunity to: • hear a panel of health care providers talk about research and vasculitis • pose questions to the panel • meet other patients & parents REGISTRATION EventBrite https://www.eventbrite.ca/e/3rd-ach-vasculitis-patient-parent-forum- tickets-12585307995 SYMPOSIUM BROCHURE Calgary Vasculitis Symposium http://cumming.ucalgary.ca/physicians/cme/courses Patients & parents are also welcome to attend the daytime symposium on October 2, 2014. Please see conference details in the attached PDF’s. CALGARY VASCULITIS SYMPOSIUM 2014 FINAL Vasculitis Day Program Update on Childhood and Adult Systemic Vasculitis Thursday, October 2, 2014 0800-1540 This symposium is an opportunity to learn how vasculitis research is improving the care of patients. Participants will have an opportunity to learn about diagnostic options, new treatments and long term outcomes of vasculitis affecting children and young adults. This day will help to strengthen a network of healthcare providers interested in vasculitides.
I just got back from four weeks in my special place, Maui, I never feel as alive, as healthy and as ‘normal’ as I do when in Maui. There’s something about that place that brings me closer than anything to the person I use to be before getting hit with the Autoimmune Disease stick. While on holidays, I saw a documentary that affected me so deeply that I couldn’t stop crying for days. I’d just think about it and would start crying while on the beach, or having lunch, or making supper – my husband thought I had lost it.
The documentary was “The Internet’s Own Boy” the story of Aaron Swartz. (You can see it in it’s entirety here: https://www.youtube.com/watch?v=vXr-2hwTk58 ) Why did it affect me so hard? Several reasons.
I am writing a book right now. It’s slow coming but now with Hana back at school, I’m sure it will start whizzing by again. I am not, nor have I ever been one of those people who likes to point out a problem and just let it go. I want to also have a solution. I see a way towards the goal of uniting all of the science so that we can have a database where we can look for the common thread between all 140+ Autoimmune Diseases. I have been working out the details in my mind for months, and then I see this documentary about Aaron. I’m a nobody with a really gross, incurable, stupid, life threatening disease, Aaron was a brilliant – BRILLIANT – young man who was idealistic, and wanted to use his amazing brain to better society instead of taking the all to familiar route of lining his pockets and making himself a cushy life. He did the right thing. He saw the problem, which is other people lining their pockets at the expense of an entire civilization. He wrote the Guerrilla Open Access Manifesto which describes the problem very clearly (you can read it here: https://archive.org/stream/GuerillaOpenAccessManifesto/Goamjuly2008_djvu.txt ) and the solution. Problem is with this (and freeing a bunch of scientific articles from their prison) he ruffled many a feather of people who had already lined their pockets but were now addicted to that lining and would stop at nothing to not have it be interrupted in any way. Politicians got involved, small minded, big ego prosecutors got involved and were threatening to take Aaron’s freedom in return. The story doesn’t end well, but with his efforts he is indirectly responsible for saving countless lives, and for stopping big business interest in implementing draconian internet censorship by stopping SOPA.
We have lost an enormous mind in Aaron, but his inspiration will be with me forever, because he dared to stand up to the insanity that is research and publication and big business for everyone of us. He saw the problem and he tackled it head on. Without the sharing of information, we will keep banging our heads against a wall until the end of time without anything more than little, microscopic answers to a very big and complicated question. We have the technology to sift through all the research, but we don’t have access to said research because there is too much money to be made. Publishing houses need to stand up and do the right thing. But that’ll be a whole chapter or two in my book. I can see the solution… really I can see it, and it’s doable if we are serious about healing the sick on our own continent.