I have some news to share. I hadn’t planned to announce it until September but it has been a rough few days as a community and I thought sharing something positive might be helpful.
A couple of years ago, I made a list of the goals I wanted to achieve through MastAttack. The most ambitious of those goals was to teach five other people everything I know about mast cell disease. The idea was that I would mentor and teach these people with the understanding that they would become responsible for teaching a certain number of people everything they had learned from me. In this way, my knowledge would be redundant and information much more readily accessible for patients and providers. The point was to nurture and protect an open flow of knowledge that increases as more people learn about these diseases in depth.
So I had this idea and I spent several months turning it over and over in my mind. I knew it would take up a lot of my time and mental capacity. To be worth the huge time investment, it had to be effective. I had to figure out exactly what I knew that and how to teach that to other people, especially people who do not have a strong science background. I needed people to already have some basic understanding of mast cell disease in order to be able to teach the more technical points. I also had to figure out how to do it without it stressing me out and jeopardizing my health.
Along those lines, I have been working on a secret project for over a year. I organized all the information that I felt a person had to understand to learn everything I knew. I divided it into sections and developed a syllabus for three university style courses on mast cell disease and mast cell biology.
The first of these courses will start in the spring of 2018. It will teach intermediate topics beyond the basics of diagnosis/treatment/activation biology. It will run for 8 weeks. I will post a 20-25 minute video lecture on YouTube on a specified topic. The following week, we will meet online to discuss specific questions or issues associated with the topic. These discussions will happen in the MastAttack Facebook group, to which I will be returning later this year. I will also provide some handout style materials. I’m sure the first run of this course will have some growing pains and we can see what works and what doesn’t for subsequent teaching activities.
I also wrote an introductory text specifically to give a knowledge base for students to build upon in this course. You are all currently reading that introductory text. It is the MastAttack 107 series.
The most amazing part of MastAttack is seeing people who knew nothing about mast cell disease grow in their knowledge of these complicated concepts. For people who have a very solid understanding of mast cell disease and want to learn much more detailed, technical concepts, I plan to offer a Master class. I do not yet know the format this will take. I will let you all know when I’ve developed the idea further.
I strongly believe that people should not have to pay for access to information that allows them to understand their health. For this reason, this course will be free. Lectures and materials will be publicly available. Given how much time and effort it has taken to put this all together, I am open to the idea of compensation if people want to and are able to. However, this will not affect your access to this course or the information taught in it, or your personal standing with me. No one will have to pay. I mean it.
The last few days have been hard for a lot of people. The reason for this is largely because we rely on specific people to educate others on our behalves. The solution to this specific issue is to learn how to educate others ourselves. This will never replace the need for the support of well informed providers and researchers, but it will help people to regain some agency in their own care.
The best possible situation for our community is a legion of well informed patients that can advocate for themselves and help others. The best possible scenario is for me to be obsolete. This is the MastAttack end game, and has been from the beginning.
So now you all know my big secret. I’m really excited to do this. I hope you guys are, too.
Never give up hope. Stand up and fight.
Author and founder of MastAttack