Eye Tumor Research Foundation

Eye Tumor Research Foundation

Among the many benefits to being engaged in social media online is the opportunity to learn about new research and non-profit organizations devoted to research! When I was first diagnosed and treated by Dr Carol Shields at Wills Eye Hospital things happened very fast and were quite a blur!

I just learned of a ocular melanoma charity affiliated with Wills Eye Hospital – the Eye Tumor Research Foundation.

CONTRIBUTIONS MADE TO THE FOUNDATION ARE SPECIFICALLY FOR ONE PURPOSE—TO PROVIDE SUPPORT FOR RESEARCH IN THE INVESTIGATION OF EYE CANCERS AND EYE TUMORS

NOTE: The one statistic from their brochure (below) is “Fortunately, most patients do not develop metastatic disease. Overall, 20% of patients develop melanoma metastasis but it may be more or less depending on other factors.

Every other resource I have seen quotes 50% as the average number who develop melanoma metastasis (aka METs) but that statistic is usually qualified by saying 50% will develop METs within the first five years. This 20% may refer to over their lifetime, and that would be very good information to know!

CLICK TO DOWNLOAD PDF BROCHURE

Make sure to check the charity you are researching at charitynavigator.org to verify their status as a legitimate non-profit charity and to review their most recent tax returns, which often outline where donations have been spent in the past.

#GivingTuesday

As you choose where your charitable donations go I’m sharing a post I made earlier this year: http://myeyeblog.info/choose-your-charity-wisely/

Everyone has something that speaks to them – pets, the environment, a disease like cancer that effects them or someone they love. The most important thing is to give. There are some opportunites through Facebook and PayPal where the non-profit organization can earn matching funds, so it might be a good idea to visit the Facebook Page for the charity of your choice before you donate. #GivingTuesday

Choose Your Charity Wisely

When you make a charitable contribution, do you always check to see where your donations go? Is helping fellow patients with their medical expenses your interest? Or education? Perhaps you are a fan of the Awareness Campaigns with their many colored ribbons! Or research on the cause of a particular cancer?

My primary interest is research toward a cure for Ocular Melanoma. With this narrow focus, there are a few choices. Here’s some food for thought.

“Since 2012, over $1.4 million has been secured specifically for OM research and 9 different research awards” — MRF’s CURE OM initiative

https://www.melanoma.org/research-center/cure-ocular-melanoma/ocular-melanoma-research

So in seven years, Melanoma Research Foundation has received approximately $32 Million* from 2012-2018, and only contributed $1.4 million Ocular Melanoma research.

[*This figure assumes the organization had gifts, grants and contributions of at least $5 Million in 2017 and in 2018 as they have averaged in the five years prior.]

I was surprised to learn this. I suspect a lot of Ocular Melanoma patients and friends are as well, with all the walks and galas and other six-figure fundraising successes… $1.4 Million seems a little “light” to me.


The Ocular Melanoma Foundation is another charity, but one which is completely focused on Ocular Melanoma as their Mission. Their only grant last tax return was for $25,000 and went to an organization which is not solely OM focused, the American Association for Cancer Research.

Their website says “we are able to put most of this money to work funding research through our $50k a year AACR JIA grant program” but their tax return does not seem to support this figure. However, that may be because they perhaps donate on a calendar year basis, but report their taxes using the accrual basis of accounting.

A search of the AACR website shows there is something called the “AACR-Ocular Melanoma Foundation Fellowship” and one can assume that is where their grant money ends up.

OMF also gave 16 patients financial aid for treatment-related travel and 3 people financial assistance for prosthetics.


Tomorrow on the TV Show Dr. Oz, four self-appointed representatives of the group of patients who have a connection to Auburn University and who also have Ocular Melanoma, will be guests.  These women have had extraordinary success getting themselves on the National News, featured in many markets on Local News, and even had a large feature story in People Magazine.  They have a Facebook Page and also ask for donations at their public appearances and through their website called the eyepatchchallenge.org. They are not themselves operating as a non-profit organization, nor have they affiliated with any ocular melanoma organization or charity. They chose instead to direct those donations to a local organization called The Community Foundation of East Alabama. Their fundraising efforts are to raise money for the research efforts in Auburn, Alabama. They published the following specifics “Dr. John Mason, Ocular Oncologist in Birmingham, Alabama has agreed to lead the research efforts. He outlined a three-arm effort which would require a budget of $135,000. The three arms of research would include genetic or germline testing, geospatial testing, and environmental testing.” The group has not made clear whether all the patients who have a connection to Auburn University (the latest count from them is 47 patients) will be able to obtain this bloodwork, or whether this fundraising is just for the benefit of the four ladies we see in the media.  The environmental testing obviously will all be local, focused totally on Auburn, Alabama.


A Cure In Sight™ for Ocular Melanoma along with a generous financial gift from Jack Odell and John Dagres, are donating research funding of $100,000 to the Harbour Ocular Oncology Laboratory at Bascom Palmer Eye Institute and Sylvester Comprehensive Cancer Center specifically “to investigate a strategy for determining the pathogenicity of “variants of unknown significance” in the GNA11 gene in UM development and metastases.”

My tumor genetic testing showed “Somatic variants detected in the tumor: GNA11 Q209L 34%”. So that specific research project is of special interest to me.

NEW Research Funding to Harbour Ocular Oncology Laboratory

UPDATED – DISCLOSURE: in 2018 I had the opportunity to work for ACIS freshening up the website, publishing articles I personally wrote, and other technical website updates both as an independent contractor and as a volunteer; I also sold some products through my affiliate network and donated the proceeds to ACIS.  The total was unfortunately only about $10.


Starting mid-December and into 2019 – all of my fundraising efforts are going to be for Smilow Cancer Hospital through the Closer to Free Fund rather than to charities focused on ocular melanoma.

Blindness Awareness Month

OCTOBER is Blindness Awareness Month

I am legally blind in one eye – the one with eye cancer. My visual problems are not actually from the ocular melanoma tumor, but from radiation damage as the result of treatment to save my life.

I had no visual symptoms before my diagnosis, my cancer was diagnosed at an eye doctor visit to get a new eyeglass prescription. It is important to get regular, dilated, eye exams because while this cancer happens most often within the population who has fair skin and light eyes, it can happen to anyone.

Blindness is not actually the worst part of this cancer, it is the fact that it spreads in 50% of patients and when it does, without treatment life expectancy is months. With treatment – it can be years. But the longer the tumor is in the eye the longer it has to spread to the bloodstream where it remains dormant.

Mine spread 2 weeks after my 5 year anniversary. I’ve had three treatments so far: immunotherapy (ipi/nivo) which almost killed me; microwave ablation of one tumor which killed that one tumor; and immunoembolization, which I won’t know the outcome until my regular 3 month liver MRI in November. Then I will either do nothing, get microwave ablation of more tumors, or consider a clinical trial.

I share my story on my blog and on Facebook in order to do fundraising and raise awareness of the importance of regular eye exams FOR EVERYONE!


How You Can Help: Donate to YOUR Favorite Charity

Photo Title: Golden and Lab
Two 8-week-old Seeing Eye® puppies pose with a leather Seeing Eye harness that they will one day grow to fit and use to lead someone who is blind or visually impaired.

http://www.seeingeye.org/you-can-help/

 

A Cure In Sight™ for Ocular Melanoma eye cancer patients

https://acureinsight.org/

Fundraising Jewelry Selection

Fundraising Jewelry Selection

My favorite way to fund raise is to as an Affiliate Marketing partner.

I recently announced that I plan to continue raising money for my favorite Ocular Melanoma non-profit charity, A Cure In Sight™ through the sale of a Pura Vida necklace, ring or bracelet displayed below!

I specially curated this selection as the perfect synergy between my efforts to raise awareness about eye cancer and my efforts to raise money for cancer research.

Starting immediately I will donate any commissions* I earn from the purchase using the links below, of this adorable good luck eye charm necklace or “evil eye” ring or the Negu: Never Ever Give Up! bracelet which is one of the Pura Vida Charity Collection bracelets. This means 10% of net profits of this bracelet will be donated to NEGU by Pura Vida, in addition to me contributing my commission to A Cure In Sight!

#NEGU is inspired by 12 yr old Jessie Rees (4/8/99-1/5/12). “Encouraging and supporting kids/families fighting cancer to Never Ever Give Up!

Click the links above or the photos below to go directly to the Pura Vida web page for each item!

The Pura Vida Evil Eye Necklace makes every day your lucky day.
Nix the negative vibes with the PuraVida Evil Eye Ring
10% of net profits of this bracelet will be donated to NEGU by Pura Vida

*I am an affiliate marketing partner with Pura Vida bracelets and jewelry, which means I earn a small commission on the purchase of products made from links directly from my website, myeyeblog.info. This trio of products are the only items which will earn donations for this charity from my commissions.

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!

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 Patient Registry

Last week the Melanoma Research Foundation updated their web page about the CURE OM Patient Registry.

Many visitors to the page were a little shocked to discover that multi-year funding has been budgeted at approximately $300,000 per year!

I did a little research with folks I am affiliated with, and learned about NORD’s IAMRARE™ Registry platform.

Here is a link to the informational flyer:

Why would a charity take over the responsibility for a rare disease patient registry, go on to pretty much exhaust the 100K they raised to launch the program, then plan a system costing $300,000 a year, when they could instead, use a platform which already exists through NORD which would cost closer to $40,000 a year?