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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

BREAKING NEWS: Drs. Shields tell patients with UHC to “self pay”!

I learned from another ocular melanoma patient today, that Shields & Shields (Dr. Carol Shields and her husband, Dr. Jerry Shields) have suddenly stopped accepting United Health Care insurance. Patients with this insurance coverage were shocked to be told they will need to self pay when they want care from Drs Shields!

Wills Eye Hospital still accepts UHC as does Dr. Sato and Thomas Jefferson Hospital, where a lot of patients seek second opinions or treatment when their OM metasticizes.

Patients who were caught off guard, were told everyone was notified about this in advance by mail.  If someone has a copy of this letter, unsigned, from the front desk at the hospital.