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 https://www.melanoma.org/about-us/news-press-room/blog/update-cure-om-patient-registry]
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: https://www.melanoma.org/research-center/scientific-milestones
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 https://www.slideshare.net/MelanomaResearchFoundation/cure-om-patient-registry-update/1]
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!
 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 https://www.melanoma.org/about-us/financials-annual-reports]
 “The MRF secured 100k in funding for a Patient Registry” from private email from firstname.lastname@example.org posted publicly in the Ocular Melanoma Support Facebook Group by a Group Member.