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!


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!


Damon Runyon Cancer Research Foundation

This is the first time in a couple years that I am not a virtual participant in the William Raveis Ride + Walk fundraiser for Damon Runyon Cancer Research Foundation. But I still want to support the event even though I am not actively fundraising and participating.

So, visitors to my website are invited to donate to the fundraising efforts of Heidi Summa, one of my favorite people!

Go Heidi!!

ACIS Patient Brochure

I wanted to bring readers attention to a wonderful Brochure, produced by A Cure In Sight™. I requested printed copies and gave them to my Ocular Oncologist Dr. Lim and she called me to say how wonderful she thought they are!

I’ve uploaded a small letter sized version just for awareness purposes if someone wants to print one at home  (click image below to open)

You may email contact@acureinsight.org or call them at 919-885-5264 if you would like to get professionally printed copies of this great brochure to give to your Ocular Oncologist, too!

Eight Weeks until the Closer to Free Ride!

Eight weeks and counting until the Closer to Free fundraising ride! Thank you SO MUCH to the friends and family whose donations have helped us almost reach our goal already! Paul will be riding 65 miles

One of the things I like the most about this fundraising event is the fact that the organization is very good at educating the public about exactly were the money goes! Visit our fundraising page https://www.rideclosertofree.org/participant/Paul-Apito then click About v Ride Impact or About v About Smilow to learn more!

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. ” http://www.baylor.edu/copyright/index.php?id=56543

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!

Ocular Melanoma Doctor List

Thanks to the Members of the Ocular Melanoma Support Group on Facebook for sending changes and additional information about doctors who specialize in treating patients with ocular melanoma, and thanks to Melody from A Cure In Sight™ for providing the original database for me to use as a foundation.

Please be mindful that this list was compiled by volunteers and we make no guarantees of accuracy or the quality of medical practices, please conduct your own due diligence! Patients diagnosed with Ocular Melanoma should make every effort to include an ocular oncologist who specializes in ocular melanoma and a medical oncologist who either specializes in ocular melanoma or who networks with such specialists, as part of their medical oncology practice. Please note, this database is copyright protected, please contact A Cure In Sight™ if you wish to share or redistribute this information in ways other than standard Fair Use. Not sure what Fair Use is?

About Smilow Cancer Hospital

Smilow Cancer Hospital’s revolutionary design is based on research which links architecture and environment as an essential partner in the healing process along with advanced medicine and care. Every facet of the hospital was designed with the patient experience in mind: natural lighting, soaring atriums, improved ventilation and single-patient rooms.  Plus numerous open spaces, soft colors, a curated artwork program, a rooftop healing garden and the most caring, compassionate and professional staff in medicine today.

Learn more about our fundraising for the CLOSER TO FREE ride to benefit Smilow Cancer Hospital