As I posted in a comment to the PEOPLE magazine article last week, I have a new concern about the Auburn group and their fundraising efforts. They posted:
“Once it metastasizes 50% will potentially lose the fight within 3 years.” – Auburn OM Page
I was shocked. I am an extremely well-informed and educated Ocular Melanoma patient and since I also have METs, I cling to every story of someone living with this cancer, and have written often about how upsetting the statistics are that without treatment, people with METs live 2-8 months.
So I asked where that statistic came from! I thought it was wrong at the time, but these 4 women have connections with the OM world that I certainly don’t have and I was hoping maybe, just maybe – they had some fresh data or statistics I was not aware of. The result?
I was BANNED and BLOCKED from their Facebook page!
The REAL statistics?
50% of people diagnosed with ocular melanoma will have it metastasize, most often to the liver.
The Auburn 4 supposedly are working with a doctor and their OWN DOCTOR is quoted in the PEOPLE magazine article as saying 96% of the victims of ocular melanoma which has spread to the liver, die within three years.
I questioned the “Auburn 4” women about the claim they are using in their fundraising efforts and in addition to being banned and blocked, my Facebook comment was deleted and at least one of the 4 blocked me personally so that I can’t see any of her Facebook activity.
These “spokesmodels” for our cancer, won’t even take the time to correct the mistakes they make in their own Facebook group.
I can’t guess why they refuse to correct this information. The actual facts are in the very article about the four of them, so it’s not like the people questioning them are making up their own facts and data!
But this actual statistic makes one thing clear, we need effective treatments and potential cures for everyone, MORE than we need to find out what possible cause(s) for this cancer in Auburn.
The “Auburn 4” repeatedly chant that if they find a cause, we will have a cure within 5 years. They seem to be ignorant of cancer in general. We know multiple causes of lung cancer and still don’t have a cure. We have multiple causes of breast cancer, and still don’t have a cure. And on and on and on.
We need donations to go to RESEARCH on a CURE far more than we need research on a cause for the Auburn *cluster*. The following are three legitimate non-profit charities in the Ocular Melanoma community who all donate to research which will benefit everyone and not just a “chosen” few!
A Cure In Sight™ (ACIS) https://acureinsight.org
Ocular Melanoma Foundation (OMF) http://www.ocularmelanoma.org/
CURE OM (a project of MRF) https://www.melanoma.org/research-cent…/cure-ocular-melanoma