Doing something about something

Introducing a new newsletter

My new baby.

I started a new monthly newsletter with three other people, and it launched this week.

It won’t be of interest to most readers, and that’s cool. We’re reporting on news and information relative to clinicians, researchers, and families dealing with more than one biological relative with glioma. That’s a catch-all term for a range of nasty brain tumors, including glioblastoma. Glioblastoma is always fatal, with a 5-year survival rate of 5%.

These cancers are rare, and familial cases are even more so. But anywhere from 5% to 20% of cases involve biological relatives, my father, aunt, and brother among them. If someone could figure out what the connection is, that might lead to prevention or a treatment. That would be amazing. Cancer researchers are working miracles these days, so why not create a few more?

We discussed creating a new organization, and I even enrolled in a nonprofit leadership program that the Chicago Booth School of Business offered to alums toward that goal. As part of that, I interviewed a few people who started medical nonprofits, and then reality set in. Starting a new organization would be a lot of work, much of it administrative. We don’t have someone with several million dollars willing to fund moonshot projects, and the U.S. government has cut back medical research funding. There are already a lot of different foundations and medical groups looking at brain cancer generally, if not glioblastoma specifically.

We’re operating in that space between someone ought to do something and seeing that someone is actually doing something. The actually doing something would be studying these clusters and using the information to find a way to prevent or treat gliomas. But we’re beyond someone ought to do something. There is a Facebook group and a Subreddit. We’ve collected a list of organizations working on brain cancer made introductory calls, so existing organizations know that there is a loose affiliation of families out there willing to participate in research programs.

The Familial Glioblastoma Newsletter is a next step. We can help create awareness and share resources without spending any money, hiring fundraising consultants, or filing for 501(c)3 status with the IRS.

I hope that none of you have more than one biological relative with glioma, because brain cancer is terrible. But if you do, or if you know someone who does, or if you know a researcher or clinician working in neuro oncology, please let them know about our newsletter. There’s a group of families that want to help them understand this better.

I also want to remind you that it is possible to do small things that make a difference. As a society, we have gotten away from community organizations and voluntarism in favor of professionalism, and that’s often very good. But it takes away the sense that we can get together and do small things that add up to significant change, and it means that a lot of people don’t even know where to start.

What do you want to do? Do you need ideas of where to start? Let’s discuss this in the comments.

Finally, here’s a classic song from Rush. The band’s original drummer, Neil Peart, died of glioblastoma in 2020. His brother, Danny Peart, died of glioblastoma earlier this year.