Common Sense and Fair Use

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.

Ocular Melanoma DR list

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. ”

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!

OM Patient Registry?

I recently wrote to someone in a private message: I come from an art background and critique is how you learn; questioning leads to answers and solutions. It’s not the same as criticizing just for the sake of pointing out flaws and it is NOT an attack.

It is with that same spirit I post the following critique of the MRF/CURE OM handling of updates regarding the Patient Registry they are coordinating for the benefit of the Ocular Melanoma community as well as ask qustions which I feel are important for the organization to address.

I only started to engage again online in the Ocular Melanoma community in November when I was diagnosed with metastasized ocular melanoma. The first thing I looked into was the OM Patient Registry. There was nothing! I know the idea was discussed back in 2012 when I was first diagnosed.

I learned a few things, none of which were comforting to me at all! First to clarify, CURE OM is an initiative of the Melanoma Research Foundation [MRF]. It is not an actual non-profit organization on it’s own. It cannot fund raise or accept donations independently of MRF.

MRF through the CURE OM initiative had formally taken on the Patient Registry as a project in 2016. In fact, in either late 2016 or early 2017, they announced they had the funding and the Registry would be launched in 2017.

Basically, every time I have asked “what happened” I get personally attacked, threatened with being blocked from certain Facebook Pages, and my motivations questioned. To say the least, that is not a professional way to address the public’s’ concern! To be honest, I am not really sure what some of these people’s positions are with the organization, but they certainly present themselves as “representing” the nonprofit!

Some history from the MRF Website: dated October 19, 2016 In Chrisi’s Words:

“Perhaps the most exciting announcement of the weekend, from my perspective, was the announcement that the 2016 #CUREOM Unite! campaign would be committed to funding the creation of a national registry of OM patients.”

So where do things stand since this exciting announcement?

“The patient community has been closely involved in each step since– from an enthusiastic fundraising campaign to launch the program to guiding each successive action through a Patient Registry Steering Committee made up of OM patients, caregivers, healthcare professionals, researchers and MRF staff.”

“The Registry Working Group agreed to offer regular updates following their meetings so that the OM community will know the progress of the registry and the decisions being made.”

[ref 6/2/17]

Maybe I am just impatient but, an update once a year is not what I consider “regular updates”!

So, what have the updates been since this June 2, 2017 Update?

I searched the website:

No updates on the Registry for 2017 or 2018 [the “CURE OM Patient Registry” link predates the June 2 article]

This indicates that between June 2, 2017 and the May 2018 Slide presentation – unless I the search function on their website does not work, there have not been the promised regular updates.

[May 2018]

In reviewing the slides, the things that are “done” I am pretty sure we were told were done back in late 2016/early 2017 when the MRF/CURE OM announced the Registry Launch for 2017. But, according to the slides, they have not even selected a “registry platform provider”! There are no updates on how much of the funding was spent or on what, how much money is left which is allocated toward the next steps of actually launching the Registry, nor is there a budget listed for how much more money is needed nor any outlines for how they plan to obtain sustainable funding.

That leaves the questions I still have:

  • Why are the MRF audited financials and 990s for 2016 and 2017 not on the website?¹
  • How much of the original 100K in funding is left?²
  • How much additional funding earmarked for the Patient Registry has been procured?
  • When will the Patient Registry actually be launched?

In reviewing the steps left to complete, I am surprised that the Launch was announced for 2017, but critical “beginning” steps are still left to start [i.e. contracting with the chosen registry service provider and building the technical components of the registry]

I am also really concerned that “we don’t have the money” is already being floated as an excuse for not launching as fast as possible. [i.e. “Next steps include securing multi-year registry funding” ] It just seems to me that before an organization as experienced as MRF takes on a project this complicated, then elects to reject a contribution of $40,000 from cooperating nonprofit organizations [i.e. OMF and ACIS] they would have a budget in place which includes and addresses solutions in advance, for multi-year funding.

  • Exactly why did MRF/CURE OM reject the $40,000 offered by OMF and ACIS?
  • What plans are in place for multi-year funding and what is the amount needed?

I am allowing comments to this Post and encourage respectful discussion about this important topic!

[1] Kyleigh M. LiPira, MBA, CEO Melanoma Research Foundation emailed me saying “…all financial information is contained in the most recent Form 990 and other publicly listed documentation of the MRF” and a link which showed the financials 2015. [ref]
[2] “The MRF secured 100k in funding for a Patient Registry” from private email from posted publicly in the Ocular Melanoma Support Facebook Group by a Group Member.