Ocular Melanoma in PEOPLE magazine article!

Another amazing media feature about Ocular Melanoma – this time in PEOPLE magazine! These four ladies from the Auburn “group” have managed to bring their story to the mainstream in such an amazing way! Congrats ladies!

https://people.com/health/auburn-university-alum-eye-cancer/

As this article states, the fundraising efforts of this group is “…focused on finding others from Auburn with the disease and raising money for research into its mysterious connection to the school…

The nationwide exposure, from newspapers to television news and now a story in People magazine, is extraordinary!

But as a patient going on six years into this cancer battle, one quote from the article was particularly upsetting to me. That the research efforts are “starting at square one” according to the doctor interviewed for the article.

“But there are four of us, two of us in treatment, would you expect cancer patients to raise money for their own research? That is ludicrous to suggest but that is what we we are doing, through eyepatchchallenge.org.”

Bad reporting!!  There are not four of them from Auburn, there are over 35 people diagnosed with ocular melanoma that have a connection to Auburn and I am quite sure some of them are also in treatment or participating in clinical trials, and sadly, some of them have died.

I know how that quote made me feel. I can only imagine how I would feel if I was one of the Auburn patients or the family of someone who died from this!

In addition, this is not the first group (not statistically a “cluster” even though most of us in this community think of it as a cluster); there is also another group of 18 cases of ocular melanoma that has been reported in Huntersville, NC since 2014. That was briefly mentioned in the video but not in the website article itself.

And of course, there are the hundreds of thousands of people like me around the world who also have OM. Why did the author never even mention the rest of us?

Also, It’s also not the first time cancer patients have raised money for research. I am pretty sure we’ve all seen the Pink Ribbon campaigns!

The facts is, ocular melanoma patients have been raising money for research into their rare cancer for many, many years. It is really unfortunate the author did not include information about these fundraising and research efforts, too.

I’ve been a virtual “walker” to raise money for the Damon Runyon Cancer Research Foundation through the William Raveis Ride + Walk annual event. 100% of the donations go toward cancer research, and some of that very research led to an immunotherapy drug used to treat ocular melanoma!

[2010 – Development of Yervoy – Led the clinical trials of Yervoy, a life-extending immunotherapy for metastatic melanoma approved by the FDA in 2011.] https://www.damonrunyon.org/our-impact/timeline

This is a one day, annual event which in only three years, raised over $1.5 Million for the foundation. I can only imagine the amount of money which would be raised for Ocular Melanoma Research if our little real estate broker’s annual event got the national attention the Auburn group has received!!

Now, I’m not participating this year but am proud to link to my co-worker Heidi who is! https://www.raveisridewalk.com/index.cfm?fuseaction=donorDrive.participant&participantID=3790

Everyone needs to find the charity which fits with their personal beliefs and interests; whether that is helping other patients with the costs of treatment, or raising awareness, or research.

I’m not sure why the article did not educate the public about the specific non-profit charities which are set up with a Mission devoted to raising money to find a cure for Ocular (aka Uveal) Melanoma; so here are some links to some of those additional OM organizations in case readers would like to make a donation:

A Cure In Sight™ (ACIS) acureinsight.org

Ocular Melanoma Foundation (OMF) http://www.ocularmelanoma.org/

CURE OM (a project of MRF) https://www.melanoma.org/research-center/cure-ocular-melanoma

And of course if you are in CT, you may want to donate to the annual Closer to Free fundraiser to raise money for Smilow Cancer Hospital/Yale Cancer Center, which includes funds going to aid melanoma research! Here is a link to my husbands fundraising page – he’s riding 65 miles to raise money!

https://www.rideclosertofree.org/participant/Paul-Apito

One thought on “Ocular Melanoma in PEOPLE magazine article!

  • July 28, 2018 at 12:07 pm
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    I have a new concern about the Auburn group and their fundraising efforts. Last night I saw a post which contained the following statistic:

    “Once it metastasizes 50% will potentially lose the fight within 3 years.”

    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 think it’s wrong 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 get METs.

    100% of those people will die. I am one of them.

    Whether we live for months or years right now is pretty much genetic lottery, whether or not we have the aggressive mutations or not, whether we respond to immunotherapy or not, whether we respond to drugs being tested in clinical trials or not. I will never give up hope something will help me survive with this cancer until there IS A CURE. I need to be a grandmother. I need to meet my future grandchildren waiting to be born some day years from now.

    But if that statistic of 50% of us with METs “potentially lose the fight within 3 years” is a real statistic – I DEMAND to know WHERE that came from. And if it is not – then we ALL deserve a public apology.

    People with METs die because we don’t have a cure and the ONLY way we will have a CURE is for this community to UNITE and donate toward RESEARCH. RESEARCH. RESEARCH. So pick your non-profit Charity whether it’s one of the three focused on OM, or one of the many Melanoma charities, or a doctor or hospital doing research and running trials. But please, take a moment to research where your money is going because it really matters.

    Reply

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