Yesterday I had an experience which I can only describe as a shocking example of how certain non-profit organizations conduct themselves in ways which are not only hurtful, but hateful. Is the competition for donation dollars that dire that they have to pretend other non-profit organizations don’t exist, out of fear that someone might choose to donate to “the competition” instead?
Is the challenge to increase Membership in these Facebook Groups really that important that these organizations need to delete posts which even mention that other Support Groups exist? Seriously, use some common sense – there really are enough patients with ocular melanoma to go around, in spite of this being an extremely rare cancer!
So, here is what happened to me on the Facebook Group run by the Ocular Melanoma Foundation. A Member posted offering to recommend his doctor for the list of recommended doctors. Unfortunately this Member did not realize that OMF has not updated their list of OM Specialists since 2016.
Another Member posted saying that I had recently updated a list of doctors and would be happy to add his recommendation.
I commented on that post and wrote that the database I had worked on was actually a project for another OM Support Group and was available to view on my Blog, but that I was not going to post a link to my blog because one time in the past I included a link to my blog (which by the way, used to include links to the OMF website and their Facebook Group – prior to yesterday that is) and that comment was deleted. But I said feel free to look on my personal profile for a link to the blog. So no links, nothing which violated the rules of the Group.
The comment by the other Member referring to me, and my comment following up on that, were both deleted. I posted:
Well, I sure got my reply! My follow up comment above was also deleted, and this official OMF reply took it’s place:
Curious, this OMF Representative claims to know nothing about me yet they make it clear to everyone in the Group that they consider me a “nobody”! And claim to have “no idea what this is about” but yet they know the file has a copyright notice at the bottom of the PDF document! How is that possible?
But to go on and publicly accuse me (and by extension the Copyright owner, A Cure In Sight™ and the volunteers who worked so hard to create the original database I was able to work from, as well as the generous Members of the Ocular Melanoma Support Group on Facebook who took their time to review the excel file, proofread it, and send me corrections and additional information) of doing something that “does not help anything or anyone” is simply unacceptable.
You know what doesn’t help anyone? A non-profit organization that can’t even keep their own list of doctors up to date. That that includes MRF/CURE OM. Their lists are completely out of date, too! Click these links and see for yourself (that is if you can navigate around their website and find this information at all!) Here is what the buttons look like:
So yeah. I am a nobody OMF. You are right.
I’m a nobody with ocular melanoma which has metastasized to her liver.
So I know my time is limited and wanted to contribute something which may help someone newly diagnosed to find an ocular melanoma oncologist or find a medical oncologist who can help them navigate the scans and bloodwork, and if the worst happens, be a part of their care team who guides them through treatments and perhaps, clinical trials. Your dismissive treatment and hostility speak more about your core values and corporate culture than they do about me.
True success does not occur by making efforts to have others fail. Real leaders go out of their way to emphasize both teamwork and the importance of collaborative work.
FAIR USE: “Fair use allows limited use of copyrighted material without permission from the copyright holder for purposes such as criticism, parody, news reporting, research and scholarship, and teaching. ” http://www.baylor.edu/copyright/index.php?id=56543
So as long as the use was what is known as “Fair Use”, no one ever had to request permission from ACIS to copy the Doctor List. Some examples of Fair Use are sharing the file for a non-commercial purpose as we are here; downloading it as a personal reference; or even another nonprofit organization using it for educational purposes!