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/

OMF & ACIS Donation News

Thank you to the Ocular Melanoma Foundation (OMF) and A Cure In Sight™ (ACIS) for their donation to the Eye Melanoma Research Fund at Thomas Jefferson University (Dr T. Sato) which was acknowledged during the poster presentation last month at the 2018 American Association for Cancer Research (AACR) meeting.

It’s very exciting to see all the new and innovative and brilliant research being done to find a cure for our rare and deadly cancer!